Autism (Amendment) Bill: Second Stage

Private Members' Business – in the Northern Ireland Assembly at 11:00 am on 21st September 2021.

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Photo of Pam Cameron Pam Cameron DUP 11:00 am, 21st September 2021

I beg to move

That the Second Stage of the Autism (Amendment) Bill [NIA 31/17-22] be agreed.

Photo of Christopher Stalford Christopher Stalford DUP

In accordance with convention, the Business Committee has not allocated a time limit to the debate.

Photo of Pam Cameron Pam Cameron DUP

As chairperson of the all-party group (APG) on autism, I am conscious of the legacy of political action that I lean on; in particular, I refer to the late John Fee MLA, who brought the first debates on autism before the House, and to the dedication of Dominic Bradley, a former MLA and chairperson of the all-party group on autism, who saw his private Member's Bill on autism pass into law in 2011 and emerge as the most comprehensive, lifelong, cross-departmental, equality, single disability legislation worldwide.

When the Autism Act (Northern Ireland) 2011 was introduced, it amended the Disability Discrimination Act 1995 to recognise and protect the rights of people with autism: autism could no longer be ignored or denied. It was also the first legislation passed by the Assembly that mandated cross-departmental service planning and delivery across adult and children's services. As such, it predated the Children's Services Co-operation Act by four years. The 2011 Act was ahead of its time, and it mandated a recurrent seven-year NI autism strategy across all Departments. Unlike other strategies, the implementation of the strategy was a legal requirement.

The all-party group on autism, established in 2008, evolved from a network of MLAs in the Assembly who had been lobbied by Autism NI over the previous seven years. The period was characterised by evidence gathering with grassroots parent organisations that linked all our constituencies and by the building of international partnerships. Publications were launched, and delegations met counterparts in the US Congress, Westminster, the Dáil, the Scottish Parliament and the Welsh Assembly. The Celtic Nations Autism Partnership was formed, which was a coalition of indigenous national autism charities in Wales, Scotland, Northern Ireland and the Republic of Ireland, and it acted as a facilitator during that time.

All that work represents nearly two decades of political action on autism, and that is the legacy that I refer to. There are Members here today who were an integral and vital part of that journey. However, the reality is very different from what we anticipated. Ten years after the introduction of the Autism Act, I stand here to remind Members that a key pillar of the original Act has failed. My comments today will leave many of us not proud but ashamed at our failure in oversight. A lack of accountability, scrutiny, motivation and leadership by those entrusted with implementing the landmark legislation has meant that a uniquely mandated national strategy has not been actioned despite annual departmental promises of renewed and refreshed actions or intentions to the contrary.

In 2016, the all-party group on autism sponsored the launch of the 'Broken Promises' report published by Autism NI and the National Autistic Society NI. That report remains the only objective, independent evaluation of the post-Autism Act era. The damning concerns highlighted by the report were further investigated by the all-party group on autism during the three-year suspension of the Northern Ireland Assembly and the COVID-19 pandemic.

The all-party group on autism has, as a consequence, gathered evidence confirming that only one of the three action plans in the mandated Northern Ireland autism strategy has been completed; the Northern Ireland autism strategy progress reports are extremely subjective, generic and absent of any measurable outcomes or targets; no independent research or evaluations have been generated to assist discovery, planning or delivery; and a well-publicised plan by the Health and Social Care Board (HSCB) to initiate an independent study to explore the differential rates of diagnosis across the five health and social care trusts was never implemented. Answers to Assembly questions submitted by members of the all-party group on autism confirm that the causes of diagnostic inconsistencies across trusts remain unknown. We have a letter from the Health Minister acknowledging that his Department does not know why there are such inconsistencies from trust to trust.

No Department has submitted any new bids for funding for autism services in the last 10 years. The autism prevalence report produced by the Department of Health now reflects that we have the highest autism prevalence rate in the world, with one in 22 school-age children having a diagnosis of autism. No new funding was attached to the Autism Act (NI) 2011 implementation. The only published new recurrent funding injection was in 2016, when £2 million was allocated to the Health Department towards diagnosis.

The Department of Health maintains a medical rather than a social model of disability. That has created serious funding imbalance for conditions such as autism that require educational, social and community intervention. The Autism Act (NI) 2011 requirement for an autism awareness campaign has been replaced by an optional in-house intranet exercise and coffee mornings instead of the implementation of the initiatives recommended by the NI autism strategy's research advisory committee.

The impact of all that is best summarised by the reaction to the October 2020 public consultation on the Autism (Amendment) Bill that we are debating. The public consultation received in excess of 1,800 responses, making it the highest response to draft legislation in Northern Ireland's history. The high response rate is a huge indicator of the level of concern. Ninety-two per cent of respondents supported the need for an independent scrutiny mechanism as they believe that scrutiny, transparency and research in relation to autism services are inadequate. Ninety-five per cent of respondents supported a cross-departmental accredited autism training strategy that is coordinated to target key staff and reduce costly duplication. Ninety-four per cent of respondents highlighted concerns and the need for consistent adult autism services. Similar support was evident in the consultation for assessment and post-diagnostic services to be consistent across trusts. Most significantly, there has been overwhelming concern that the situation regarding support services has become worse. Obviously, that corresponds with the lack of investment in leadership, motivation and resources during a period of accelerating prevalence.

Another important issue is the current financial cost to families. Private autism diagnosis clinics are on the rise as parents turn in desperation to any service they can to access timely diagnosis and intervention. Many families cannot afford that route and are getting into debt to find answers and get help. That is damning evidence of the failure of our Health and Social Care (HSC) sector, which should be free and timely at the point of need for autistic individuals. The fact that a private diagnosis is recognised by our health and social care trusts, whereas 10 years ago it was not, can be interpreted only as an admission of not having the capacity to meet the need. It should also be noted that private diagnosis at a private clinic often logically ties families into costly post-diagnostic early interventions.

Meanwhile, the postcode lottery continues between our five health and social care trusts, with families reporting huge service inconsistencies depending on which side of the health and social care boundary you live. We also know from research that families living with autism already make financial sacrifices, with many carers being forced to move to part-time employment options. That leads to many parents and carers having increased stress, depression and anxiety compared with the general population, and that is compounded by the lack of access to professional expertise due to the Executive's long-term failure to invest in autism training and resources.

There is also a financial cost to the public purse that can largely be summarised in the current costs associated with waste and duplication: duplication due to the lack of consistency and coordination across our health and social care trusts and our Departments and waste due to the failure to utilise and integrate the expertise in the autism advocacy sector through service development and funding partnerships.

All those critical issues indicate that the Autism Act (NI) 2011 must be strengthened. The Autism (Amendment) Bill would build on the 2011 Act by introducing measures to remove the existing barriers to the full implementation of the law. Crucially, we need an independent scrutiny mechanism to drive forward future Northern Ireland autism strategies. That should be in the form of an autism reviewer.

There are eight clauses in the Bill. The last three refer to the interpretation, commencement and short title of the Bill; therefore, I do not feel that they need further explanation. I will now give a summary of the remaining five clauses and outline the reasoning behind them.

Clause 1, "Autism strategy: consultations and data", expands the duties of the Department of Health to gather autism prevalence data on adults as well as on children. Currently, Department of Health data focuses on children only, but we need to gather adult data to aid future planning and service provision for our autistic adult population. We have no idea of the number of autistic adults; therefore, it is imperative that we develop our data collection systems further. Clause 1 also introduces a duty for the Department to consult more widely.

Clause 2, "Additional components of autism strategy", expands the autism strategy to include the development of an autism training plan for staff across Departments and public bodies. That will reduce duplication and increase consistency, coordination and competency across agencies. It will also enhance workforce professional development and introduce a tiered strategy, from basic awareness training for the many to targeted accredited training for the few. Two of the most obvious examples will be training for all teaching staff in Northern Ireland as well as mental health professionals who work with autistic people.

Recent research demonstrates the difficulties that those with autism are more likely to experience. Suicide is the leading cause of death in the autism community. An autistic child is 28 times more likely to consider or attempt suicide than his or her non-autistic peers. Autistic adults are nine times more likely to die by suicide than neurotypical adults. Autistic women are more likely to die by suicide than non-autistic women. Approximately one in five women with anorexia is autistic. Mental health issues in the autism community are often misdiagnosed due to poor communication and understanding between patients and practitioners. Mental health treatment needs to be adapted for autistic individuals. Those working with autistic individuals in Departments and public bodies need to be adequately trained in autism if we are to improve the everyday experience of our autistic colleagues, friends and family members.

Clause 2 also expands the autism strategy to include the development of a regionally consistent early intervention service that will ensure that regionally consistent ethics and practice feed into the autism training strategy. We all know that early intervention works. It is also cost-effective, as it reduces later dependency on core services. There are fantastic best-practice models locally that need to be tapped into and delivered regionally. Most importantly, a regionally consistent early intervention service will ensure that families receive the right guidance, help and support when they need it to help to put an end to the current postcode lottery of support.

Clause 2 proposes the development of a regional information service. As the prevalence rates of autism have risen, so has the imminent need for information and support. A regional information service will ensure consistency of advice and signpost autistic adults and families to local services in their areas. It should be available through a number of media to accommodate different circumstances — for example, via telephone, in person or virtually. I am sure that other Members can sympathise with families who have come to them in desperation for advice and support. Numerous families have come to me and asked where to access support, how to access the right type of support and how to access services after diagnosis. Some families do not know where to go, but, more worryingly, others have tried to seek support but have been failed by the lack of an accessible information service.

Clause 2 also outlines how adult services need to be developed while considering core areas of need. It proposes the development of a regionally consistent range of adult support services. The extension of data for autistic adults will improve the capacity to map need. Only 16% of autistic adults are in full-time employment, which is less than half of the total figure of those in the disability sector. We can all agree that that is an area that needs to be invested in and developed further.

Social opportunities are also needed as so many adults feel misunderstood, alone and unsupported. That is evidenced by the stark fact that an autistic adult is nine times more likely to commit suicide than a neurotypical adult. The lack of support services and opportunities may be contributing to that terrible statistic. Again, many families have contacted me to seek support for their autistic adult children, brothers, sisters, aunts and uncles. They deserve to be supported to reach their full potential and engage in the community and the workforce in a fulfilling and meaningful way.

Clause 3, "Methodology of the autism strategy", places a duty on the Department to ensure regional consistency of practice, which will be vital to ensure the success of other, aforementioned components of the autism strategy, such as an early intervention service. Clause 3 also outlines how the autism strategy must have measurable targets and outcomes to measure effectiveness, which speaks for itself. Ultimately, any truly effective strategy must be measurable in order to assess success and what improvements and changes need to be made to achieve overall aims. The strategy should be the basis for ongoing transparency and accountability and will be an essential tool for the autism reviewer.

Along with the general duty to consult that is introduced in clause 1, clause 3 includes a specific obligation to consult organisations when setting measurable targets. The autism strategy must be developed in consultation with the autism community. Nobody knows the needs of the autism community better than our autistic people and their families, as well as the voluntary and community sector that represents them. Over the past 10 years, that consultation has not happened.

Clause 4, "Annual autism funding reports", places a requirement on the Minister to lay a report before the Assembly from all Departments, setting out how funding for autism has taken account of the NI autism strategy, the needs of autistic individuals, the current prevalence rates and the potential for partnerships with autism rights bodies. This amendment will address the previous failure by all Departments to bid for investment to progress the Northern Ireland autism strategy. It will also evidence the matching of data against investment; for example, whether a rising prevalence of autism is being matched by rising investment.

Clause 5, "Autism reviewer", will introduce a requirement to set up an independent scrutiny mechanism, which will be known as the autism reviewer. The duties of the autism reviewer will be to monitor the effectiveness of the Northern Ireland autism strategy and advise the Assembly; to assess the effectiveness of the funding arrangements in respect of autism; to review the adequacy and effectiveness of the law and practice relating to autism; to review the adequacy and effectiveness of services provided for autistic individuals and their families; to commission independent research; and to issue an annual report to the Department, which must be laid before the Assembly.

Finally, it would be remiss of me not to acknowledge the particular pressures that are being faced by Departments as a consequence of the current pandemic. Specifically, I am aware of the long-standing failure to invest in the future of our national health and social care service. The introduction of the Autism (Amendment) Bill, which has cost implications at this time, must be conducted with sensitivity and realism. The reality must be balanced by the awareness that the Autism Act (NI) 2011 was impacted upon by the caution that was generated by the banking crisis and recovery measures. The failure to address funding implications or to agree an incremental funding plan impacted negatively on the implementation of the 2011 Act.

In response, I propose the appointment of an autism reviewer with a budget allocation similar to that of the mental health champion but with duties that protect the independence of that post from departmental influence or interference. A budget for research is an essential component in order to guarantee service and cost effectiveness. These measures, and the accountability that will be generated from the requirement that is placed on the Department to submit an annual autism funding analysis to the Assembly, will address proven concerns over the lack of objective scrutiny, accountability and motivation in the implementation of autism legislation.

I commend the Autism (Amendment) Bill to the House.

Photo of Colm Gildernew Colm Gildernew Sinn Féin 11:15 am, 21st September 2021

I welcome the opportunity to make some initial remarks on behalf of the Health Committee, outlining our consideration of the Bill, before speaking as my party’s health spokesperson.

This private Member’s Bill is relatively short, as Pam Cameron mentioned, with five key clauses and eight in total. As its sponsor has said, the Bill has three policy objectives: to enhance the autism strategy by strengthening the consultation process and the collection of data; to provide autism training for staff of public bodies, including setting out details of an autism early intervention service and autism information service; and to require the appointment of an autism reviewer to review the Department of Health’s functions in relation to autism.

The Committee is aware of the problems in the system with regard to helping families to get diagnoses and support as children go through education and into early adult life. Over the past year, the Committee has received correspondence, from groups and individuals, outlining the difficulties that they have and that it seems that there is a postcode lottery for the time taken to get a diagnosis and support. We have heard from individuals that they have had to go private to get an early diagnosis to try to get support as early as possible. Many studies have been completed that show that early interventions help and that early behavioural interventions can ensure that children learn life skills and coping mechanisms that will equip them for life in mainstream education and into adult life. We absolutely need to support families through this process, to ensure that diagnoses and appropriate support are provided at the earliest opportunity and that services are provided consistently across all trusts.

At its meeting on 16 September 2021, the Committee was briefed by the sponsor of the Bill and representatives from Autism NI on the principles of the Bill. During that briefing, there was discussion about the prevalence of autism here in the North, which has the highest prevalence rate in the world. As the Deputy Chair said, there is a rate of one in 22 children with autism in our community. The sponsor outlined that, by and large, this Bill will implement and improve the previous Autism Act from 2011 and that it will introduce the appointment of an autism reviewer. The Bill outlines that the role of the reviewer includes monitoring the implementation of the autism strategy, considering funding arrangements in respect of autism, keeping the effectiveness of the law, practice and services relating to autism under review and commissioning research on autism.

During the briefing, Committee members asked a number of questions about the Bill, including questions about the proposed costs of the reviewer and of the implementation of the early intervention service and autism information service. The proposer advised that the Assembly's Research and Information Service (RaISe) is undertaking research on the costs relating to the Bill. We look forward to seeing that research in due course.

Members also asked questions about autism training for staff. There was discussion about some very good examples of training of some front-line staff and about how there needs to be learning and sharing of that best practice. There was also some discussion about why legislation was required and why this could not be better delivered through the autism strategy. Members raised the need to provide autism awareness to children and young people in schools and the need to provide support for adults with autism and their carers.

Following the Bill passing First Stage in July, the Committee agreed to go out for consultation. That was due, in part, to the significant and very heavy legislative schedule that the Committee will have over the coming months. I take this opportunity to encourage organisations and individuals to take part in the consultation process. Further information on that can be found on the Committee's website. Provided that the Bill passes Second Stage, the Committee looks forward to engaging with stakeholders and scrutinising the Bill in further detail.

(Mr Deputy Speaker [Mr Beggs] in the Chair)

I will now make some remarks as Sinn Féin's health spokesperson. I want to recognise that there is a considerable network of families, activists and organisations that are interested in improving the outcomes and lives of those with autism and their families. Those include Autism NI, the National Autistic Society (NAS) and other groups, collections of individuals and individuals who have struggled and worked together to try to improve services across this area. I also acknowledge Pam Cameron from the DUP for bringing this Bill forward and recognise the cross-party support and ongoing work of the all-party group on autism. All parties, including mine, are on that all-party group.

We all understand the huge difficulties that many people in our community encounter when dealing with autism and getting services in the first place. I have experience of that, as I am sure that we all do. I have met with literally hundreds of people who are struggling with autism, and I will very quickly touch on one case that I dealt with a couple of years ago, pre-COVID, which highlights how difficult it can be.

It was the case of a woman who was on her own. She had two children, one of whom had a diagnosis of autism and the other of whom was going through the process of having a diagnosis confirmed. That diagnosis was eventually confirmed. She was struggling on her own to get services for the child who had already been confirmed as having autism and to get the assessments done.

In the midst of all that, her day-care centre closed as a result of an emergency admission, which left her struggling and, at one point, in the heartbreaking situation of having to consider whether she was able to manage with both of her children or whether she would have to, in their interests, ask the state and the health services to provide care for that child. The situation was addressed over time and some support was put in, but she struggled and came very close to breaking point. Having heard from her about some of the situations, I honestly do not know how she coped; at times, she had to choose which of the appointments she would take and which she would reject and maybe not get rescheduled for a long period. We are all aware that those are the difficulties and that there are very difficult situations to deal with individually and collectively.

Sinn Féin is concerned about the services that are provided to those with autism and their families, including access to assessments, follow-on support services and early intervention. I acknowledge that the Minister has agreed to improve the collection of data so that we can get a better idea of the picture of how many people are having to privately access assessments, which are so badly needed.

The interim autism strategy that was launched by the Department is not up to the task of improving the lives of and outcomes for those with autism or their families. Sinn Féin brought a motion to the Assembly on 11 May that called for a longer-term strategy to be co-produced with the sector. It was amended by the DUP to include measurable targets, which we supported. The motion was strongly supported in the House.

COVID-19 has had a huge additional impact on families and those with autism. Usual routines or coping strategies were denied, and lives that were already difficult were turned upside down. Many families are struggling and are at breaking point, which is often overlooked. It is also relevant today to, once again, acknowledge that we have not provided additional support to carers to make up for the supports that were withdrawn as a result of COVID. Those have not been fully rebuilt. We have not done anything additional even to acknowledge the work of carers, and they are struggling — no question.

Sinn Féin supports the principles of the Bill. We are eager to engage on its substance clause by clause. I thank the Minister for facilitating a meeting that I will have tomorrow with senior officials from his Department about the autism strategy, the autism forum and the issues that have already been raised in the House today and those that will be raised throughout the debate.

Photo of Daniel McCrossan Daniel McCrossan Social Democratic and Labour Party 11:30 am, 21st September 2021

As the SDLP's education spokesperson, I support the broad principles of the Bill. I thank Pam Cameron for bringing forward something that is vital to so many people across Northern Ireland and many in the House directly. I speak today as not just an MLA or the SDLP's education spokesperson but as an uncle of a six-year-old child called Ashton who has autism and is non-verbal. It has been a learning process for my sister, her partner and our family as we have watched that child develop and seen, increasingly, how difficult it is to get support from the system. That support did not exist pre COVID, and it certainly has not existed during COVID. There are so many gaps in the system. Things that you could not possibly imagine occur when a child is frustrated and cannot express how they feel properly or communicate. I suppose that that is their form of communication. Ashton is a wonderful child. He is very smart and bright. He loves to carry on, and loves getting out in the car. That is the only time that he settles for my sister; she drives around for an hour to keep him occupied and busy. I speak today with him in mind, because I have seen the worst, and the best, possible scenarios emerge.

The Bill deals with this very important issue. I want to highlight from the outset that the support and services for people with autism across Northern Ireland are inadequate and underfunded and simply do not get the attention that they deserve. We have spoken about this many times in the House, but more so over the last few years. If we look at the Autism NI website, we see that, over the last five years, the rate of autism has increased by 82% among schoolchildren. One in 24 children in our schools has autism, and 86% of children with autism have special educational needs. Over 4,500 children are on the waiting list for an autism assessment. Those figures are damning, and they clearly point to a situation that needs to be tackled. There is strong support across the House to see that we do all that we can to ensure that that happens.

The waiting lists for autism and special educational needs assessment are absolutely appalling. It is clear that, while demand for services has substantially grown, it has not been met with the additional budget or resources allocated to deliver. In the Assembly, we have a terrible habit of coming up with great plans as to how we can fix major problems. We can be united around them, but often found wanting when it comes to the funding to deliver what is essential and necessary. Many families are impacted by this, and they include my own. Many struggle with no one to turn to. Many schools struggle as children wait months or years for statementing. In the context of this debate, it is vital to highlight this issue and urge the Ministers of Health and Education to work together, as closely as possible, to produce solutions to these problems and to ensure that funding is found so that we can alleviate the major pressures on families and young people and ensure that support services are there when they are needed, not many weeks, months or even years down the line.

As I have outlined, we are happy to support the Bill, and we believe that it adds to the great work that the SDLP has been pushing for almost two decades. I thank Pam Cameron for recognising the work in 2002 of our late colleague, John Fee, who did a huge amount of work on the Autism Act, and also of a former colleague, Dominic Bradley MLA, who brought forward legislation in 2011. I thank Ms Cameron for mentioning them.

The Autism Act recognised that autism was not just a Health issue or an Education issue, but a cross-departmental issue, and a developmental disability. Since then, we have had the autism strategy 2013-20, the interim 2020-21 strategy document and, most recently, a consultation on the 2023-28 autism strategy. Those strategies are all cross-departmental, introduced by the Health Minister, and aimed at addressing the whole-life needs of people, families and carers who live with autism in Northern Ireland. Sadly and unfortunately, the potential of the 2011 Act to transform people's lives has been compromised, not only by the lack of financial support, but by the lack of ministerial decision-making. I recognise that we have had a difficult process because the Assembly was absent for three years, which added a huge amount of difficulty to families and children with autism. Also, we are in the middle of a pandemic and there is no blueprint for what we have been through. I know that things have been difficult. Despite many promises, strategies and plans, children and adults with autism, along with their families and carers, still feel that they are being failed, and no one in the House disagrees with that. Every family that I have spoken to feels that the system is just not adequate to assist or deliver what is necessary to help them.

Mr Gildernew specifically mentioned a family that has a number of children who are autistic. I spoke to a single parent in West Tyrone whose four children are all autistic. It is an extremely difficult situation, and this lady is extremely brave and determined to ensure that her children receive the support that they should receive and should have received all along. I found it fascinating to listen to her experience, because I know what it is like for my sister with Ashton, and I imagine that four children in the house, stepping stones apart, would be an extremely challenging situation in normal times, but particularly during a pandemic.

It is important to stress that we can have all the strategies and action plans that we need, but they will not be wholly effective unless they are properly resourced, properly financed and properly measured. We need to see a sea change in how autism services are delivered, and we need to see tangible results come from them.

I will provide some initial commentary on the Bill's provisions. We have no issue with clause 1. As part of the autism strategy consultation process, the Bill seeks to open up engagement with other persons rather than with departmental bodies only, and that is a very good suggestion. The SDLP welcomes that and believes that it is important that as many people and organisations as possible feed into the process. There are so many that can play a vital role in ensuring that we get this right, and that is key. As we move along, we will have to adapt and ensure that we do more to support those with autism, but some of the suggestions in the Bill are already right on that.

Clause 2 would amend section 3 of the Autism Act (NI) 2011, and I particularly welcome the focus on providing autism training to civil servants and staff of all public bodies. The reason that I say that is because I recently witnessed on social media a video, not filmed in Northern Ireland, in which a police officer was in a school dealing with an autistic child. The child was in difficulty, and as pointed as I will be about it is to say that sufficient training had obviously not been given.

It is critical that everybody in public bodies be trained, but training should also happen at a community level so that people have a greater awareness of the challenges and of how they can help, support and understand what an adult or a child wants or is trying to say, communicate or do.

As we all know, last year, we got a commitment from the former Minister of Education Peter Weir on the introduction of mandatory autism training for teachers in the North, and that was wholly welcomed. I am sorry to say that, 19 months later, it has not yet been introduced. As I have said, it is not something that I am not going to politic on at all. I recognise that we are in a pandemic, but we do need to see that training happen as swiftly as possible.

Photo of Chris Lyttle Chris Lyttle Alliance

I thank the Member for giving way. I have no intention of party politicking on the matter either, but it is important to seek some clarification, as it is my understanding that the Minister of Education does not currently support the introduction of mandatory autism training for trainee teachers. Perhaps that is something on which we can get clarity.

Photo of Daniel McCrossan Daniel McCrossan Social Democratic and Labour Party

Yes, it is important to seek clarification on that. The Minister of Education is probably extremely busy, but, given the debate, it would have been good if the Minister of Health and the Minister of Education had appeared here today, even just to observe. I thank the Member for his intervention.

The amount of time that children spend in school and the opportunities available for early intervention mean that there is a massive issue here. Given that 78% of children with autism are in mainstream schools, it is absolutely shocking that mandatory autism training has not yet been introduced here. It is absolutely critical. Any public representatives who visit any school in their constituency will be told that the biggest challenge in the school, aside from COVID, is to ensure that children who are autistic or going through the process get the support that they need and, in turn, that the other children in the class also receive the support that they need. That is vital. As Mr Lyttle rightly pointed out in his intervention, we should get clarification urgently. I know that Mrs Cameron feels very strongly about the issue, and I am sure that she will follow up on it with the Minister as well.

The training needs to be incorporated into initial teacher training. A lot of teachers have come forward and suggested that it is a positive thing that they would be very keen to see happen, but there is also an inherent need to have continuous training as part of teachers' professional development, because things change. We need to ensure that the training is adequate at all times. Providing autism training cannot be used as an excuse for underfunding and under-resourcing. Rather, it should be used to bolster educational outcomes in our schools. That is absolutely critical.

I hope that the Minister of Education will follow through on her predecessor's commitment to mandatory autism training for teachers — I welcomed that at the time — and that she will consult all the teaching unions immediately on that. Given that this is a cross-departmental issue, I urge colleagues in the Executive also to raise it.

I also welcome clauses 3 and 4, and, in particular, the need for regional consistency, hard targets and proper reports on the funding allocated for autism services. Those are all very important issues.

Clause 5 introduces an autism reviewer, and that is a very welcome suggestion. The reviewer will examine and review the Department's functions in relation to autism. That welcome provision will enable another level of scrutiny and measure of the Department's performance in service provision.

In conclusion, the Autism Act should, like all legislation, be seen as a living instrument. Where necessary, it should be updated to deal with any current or urgent issues as they arise. Things have changed since 2011 and the original legislation. All of us are learning all the time from the challenges that arise, and it is important to consider that.

Parents, particularly single parents, look after autistic and/or non-verbal children who find it difficult to express themselves. I have seen parents with scraped faces and arms that are bruised and nipped. I have seen situations where a bowl has been fired through a plate glass window or things have been thrown out of car windows. I have seen a child who was in a car with only their parent become uncontrollable, and the situation became dangerous. I have seen situations in which the strongest people I know have fallen apart. I have seen people who, in a situation where they genuinely need help, call those who should be in a position to help them, but they cannot help. What happens if that parent is no longer able to cope because the system has not been there to support them? The child is affected as well. We need to get these things right. I believe that the House wants to get this right, and it is very welcome that there is such unity on this important issue.

The SDLP has no hesitation in supporting the general principles of the Bill at this stage. Indeed, we look forward to further considering and developing it at Committee Stage. We thank Pam Cameron for bringing the Bill to the House.

Photo of Alan Chambers Alan Chambers UUP 11:45 am, 21st September 2021

I also thank my Health Committee colleague Mrs Pam Cameron for introducing this private Member's Bill on autism. Pam is absolutely passionate about this topic. Autism is a condition that seems to be touching more and more families. My party broadly welcomes the Bill. We feel that a few aspects may need to be tweaked as it proceeds through Committee Stage, and I look forward to engaging in that process.

The overall objectives of the Bill are positive, and many have already been identified, with work or discussion under way: for example, clause 2(4D) states:

"The autism strategy must set out how the needs of adults with autism will be addressed".

The fact that this has already been included as an action in the 'Autism Interim Strategy 2021-2022' indicates that the Bill is heading in a direction that will enjoy broad consensus.

The Bill also includes many other worthwhile objectives, not least the further detail on training for staff in public bodies, the provision of an autism information service and taking best international practice into account. Some other parts of the Bill, such as the appointment of an autism reviewer, may require further scrutiny before the Ulster Unionist Party can commit either way. The discussion that will happen over the weeks and months ahead will be useful. Fundamentally, however, the Bill will help to focus minds, and that can only be a good thing.

For too long, autism services have struggled. Like many other services, they fell victim to a decade of underinvestment and lack of strategic direction. That has resulted in the gap between capacity and demand at present. The Minister has said openly that the current model of autism services is unsustainable. Too many people are waiting for far too long for an initial diagnosis. In turn, that robs them of the opportunity for early intervention. If it passes, the Bill will help, along with the interim strategy that the Minister published earlier this year. However, what is needed most is sustained investment to allow for the recruitment of additional permanent staff in order to stabilise and sustain the provision of the autism services that Northern Ireland deserves. As I said earlier, the Ulster Unionist Party broadly welcomes the Bill.

Photo of Paula Bradshaw Paula Bradshaw Alliance

I support the Bill. I do not intend to speak for too long on it because it is largely self-explanatory. Most of all, what I want to say is intentionally general because the Bill is primarily about filling gaps and moving in the right direction. I commend the chairperson of the all-party group on autism, Pam Cameron MLA, for bringing forward the Bill, and everyone else on the all-party group. I have raised issues at Committee, particularly around how the Bill will impact on the health and social care workforce. We have explored those issues, and will certainly come back to them. The matter affects the whole health service, but I do not think that that should hold up the Bill at this time.

I recognise many of the serious issues that have been noted by the proposer and others: the length and variation of diagnoses, the lack of support for those who have been newly diagnosed, the lack of budgets and so on. It is important to see the positive potential of the Bill to address those failings. I should state specifically that the lack of clear Northern Ireland-only data on adults with autism is one of several data failings across the entire health and social care system. It is extremely frustrating. I sincerely hope that the independent autism reviewer, whose appointment is proposed in the draft legislation, will be able to make a difference. If we want to get to somewhere, we first need to know where we are. We cannot just know.

The Bill is also useful not just because of its content but because it establishes autism as an issue that we all must take into account. Furthermore, it has long been apparent that the cost of doing something is lower than the cost of not doing it. For many years, autism has been bracketed under mental health or learning disability. That has been done with the right intentions, but it has presented autism as something that it simply is not. Presenting it in such a way risked and, I suspect, caused significant stigma. Personally, I am not sure that the word "syndrome" is helpful either. What we are really talking about is difference. In some cases, yes, significant intervention and support will be necessary. For example, it is currently the case that 86% of children with autism have special educational needs. However, if we focused on understanding and inclusion across all services and wider society, we would greatly improve outcomes.

I want to point out as an aside that responses to the current consultation on the autism strategy 2023-2028 are to be sent to the learning disability unit. While I understand why that is, I do not think that it is right to regard autism as a learning disability. It is a difference. People with autism are not automatically less able to learn: they learn in different ways. I wonder just a little whether we have fallen at the first hurdle there.

Autism should absolutely not be presented as some form of devastating diagnosis. On the contrary, in most cases, at least, it is as much about experiencing the joy of difference. As Temple Grandin — I hope that I have pronounced her name correctly — put it when she spoke in Belfast a few years ago, there must be a place in society for everyone on the spectrum and at all levels of the spectrum. As one parent of a child who received the diagnosis put it to me recently, the challenge is to work out that the child's mind will work differently. That means that suitable adaptations will need to be made, not least in the education system. The key point is to provide a sense of purpose, or, to put it another way, to emphasis what the person can do, rather than what they cannot do. <BR/>By shifting our whole perspective on autism and how to ensure that there is a place and purpose for people with autism across society, we will find it much easier to be inclusive and to raise the awareness and understanding of the whole population.

One of the biggest challenges that people bring to me is simply ensuring awareness of the connections and assistance that are out there. It is essential that people with autism and their families, perhaps most notably siblings, can build connections and share experiences from the moment that autism is recognised and diagnosed.

When I saw the Bill, I asked myself, "Does it move us towards much wider acceptance, awareness and inclusion of what is, ultimately, difference?". I believe that it does. Strengthening the consultation process, for example, should enable greater input from people with autism and their families and, therefore, greater understanding and awareness.

Will specific autism training as something distinct in its own right promote acceptance and inclusion of people with autism? I believe that it will. Will benchmarking ourselves against international best practice improve the lives of people with autism here and lead to improved awareness and better connections and, indeed, to a real sense of purpose? I believe that it will. Will the autism reviewer provision help to connect us all and enable us to better understand where we are succeeding and failing on autism? Again, I believe that it should.

I see the ultimate objective of the Bill as moving autism away from something that is dealt with under "health" towards something that we accept as "difference", which should be respected and included across public services and society. I hope that we can pass the Bill quickly and move towards implementation and towards a society in which people with autism are better connected and understood and in which they have a real sense of purpose and of who they are.

Photo of Cathal Boylan Cathal Boylan Sinn Féin

I speak in favour of the Bill, as vice chair of the all-party group, having been there for 13 years along with some Members who are still here. I want to take the debate back to the premise of the original Act. While we hope that this Bill will enhance the Act and the services for all those across the spectrum, I have to recognise the fact that the Act, in principle, was a good starting point. I pay tribute to the members of the Committee who worked on it.

It is interesting to hear conversations about the Education Minister and the former Minister, who is in the Chamber, but the Bill will not work unless we get buy-in from all relevant Departments. The autism strategy for 2013-20 and the 2013-16 action plan outlined the key roles and responsibilities of each Department in developing all that. If we do not get that right and there is not ownership and responsibility, we will not get any further with it.

The Bill is good. It has been interrogated by the Committee over the past number of years with each question that has been asked of the Department and the Minister, and I thank the former Minister for providing updates in that time.

Bringing the Bill forward today will enhance the Act and lead to better outcomes. Members mentioned personal experiences; we have all had them. In my constituency, there is a young single mother with a three-year-old who is waiting on a statement. She said, "Three-year-olds in normal society go into school and everyone talks about the 'sponge years' and giving them all the support, and here is the most vulnerable child who needs all the support". I am not denying support to any child, but, among the most vulnerable in society, that child needs access to support.

I hope that, by passing the Bill at Second Stage today, we can go forward and provide support for those who need it. I wish the Committee well in its deliberations. The Committee Chair mentioned questions that were raised at the Committee briefing. I hope that the Bill is fully interrogated and that the Committee invites all the departmental officials who may have responsibility for addressing the issues in it to interrogate them. I think that better outcomes lie in doing that as well.

I have a couple of issues. Obviously, I want to pick up on the issue of strengthening the consultation pool. If we are to formulate a proper strategy, we need to consult properly. In the original Act, that was not there. As Mr Lyttle will know, at our monthly APG meetings, the issues that come up, month after month, are data; the consultation pool; how we will formulate the strategy; and, more importantly, how, once we formulate that, we will hold people to account. That relates to clause 1.

The other issue that I want to pick up on is the training element, which is dealt with in clause 2, and on which we have had debates in the Chamber. Training has been a big element for the APG; there is no doubt about that. Like I say, there is no point in us talking about training, and there is no point in us running back to the Department of Education, if that is not going to be implemented in the way that Mr Lyttle said in an earlier intervention. If we are serious about getting this right, each of those Departments has to play its part. There were conversations about that in Committee. Mr Deputy Speaker, you have been on the Committee and sat through all the debates.

I have raised and will continue to raise the fact that, when the Act first came in, we hoped and the sponsor of the Act thought at that point that there would be a funding stream to deliver on the Act and to deliver services for those across the spectrum. The funding issue still comes up. I know that we are waiting for a paper on that from the Assembly's Research and Information Service. I am glad that the Health Minister is here for the debate. It is a cross-departmental issue, and it should be resolved in a collective manner.

As vice chair of the all-party group, I thank the sponsor of the Bill and the group for their hard work on this. I look forward to the debate in Committee and at the Consideration and Further Consideration Stages and to seeing what comes out of that. I support the Bill at Second Stage, and I hope that it gets the Assembly's full support.

Photo of Peter Weir Peter Weir DUP 12:00 pm, 21st September 2021

I support the Bill. I will not go into detail on it. A number of Members have done that, and I do not want to reiterate what they have said. However, I will make a few comments on the general flow of this. First, it is right to place on record my congratulations to my colleague Pam Cameron and to those involved in the all-party group on autism. The Bill is a fine example of how an all-party group, working alongside, in this instance, the autism sector, can deliver something that is productive and focused.

A trap that most, if not all, in the House fall into with legislation is that we sometimes believe that it is the end point. We see changes to the law as being the solution to a particular problem, and then we move on. As somebody who is unmarried, maybe I am the wrong person to draw this analogy, but it is a bit like seeing the wedding day as the be-all and end-all of a marriage without looking at the work that needs to be put into a marriage. As the vast majority of marriages do not end on the wedding day, although the odd one probably does, marriage requires a considerable amount of work. Similarly, with legislation, there is a need to nurture it. That is the case on two fronts. First, from the point of view of —.

Photo of Chris Lyttle Chris Lyttle Alliance

I thank the Member for giving way. Would a better analogy not be that it is about adhering to the vows that you make on your wedding day, if we are talking about the implementation of the original Act?

Photo of Peter Weir Peter Weir DUP

As I said, as somebody who is unmarried, I do not want to get too much into marriage overload, but I take the point.

All of us can be guilty of looking at legislation and saying, "That is it done. That is it put in a box", and then forgetting about it. It is actually about implementation, and the Member is right to make that analogy about it. That is very much where the focus of the Bill is. To be fair, nobody doubts that the Autism Act of 10 years ago is good legislation, but, even if there was good implementation of a good Bill and all the vows had been faithfully maintained, there are changing circumstances. As my late friend and colleague Gordon Dunne was fond of saying in what was almost a catchphrase of his in particular circumstances, "The game moves on". For all of us, for good or ill, in autism, the game has moved on. I will come to that in a moment.

The key emphases in the Bill are on plugging gaps and ensuring that that level of implementation is followed through. For instance, in the audit of data, we see the requirement for Departments to work together. We see in clause 3 the measurements that are there. Clause 5 provides for an autism reviewer. It is all about ensuring that best practice and best implementation actually happens. Ensuring that it happens is one of the major reasons why it is a good Bill.

I talked about the game moving on, and, while there can be concerns about the speed of implementation at times, one of the positives that we have seen in the past number of years has been a growing awareness and recognition of autism. Undoubtedly, today, despite any of the concerns that have been raised, we are in a much better position regarding diagnosis and knowledge of it than we were in a generation ago. From that point of view, while improvements can be made to the provisions that we make for our children with autism, one of the major gaps is that there are generations that have gone before us where the level of knowledge and the level of detection of autism was not the same. That is where the identification is in clause 1. We see people who have been established as having had autism throughout their life but have perhaps been identified only in the past few years. Probably, in some cases, they are still unidentified. The gathering of data and that focus on the older population, of which I am a part, is critical. That is an important element of this.

Secondly, it is important that the issue of early intervention services is put up starkly in the Bill and made a key component of it. Coming from a broadly educational background, I know the value of early intervention in a range of activities. If we are being cynical, from a state resource point of view, the earlier the intervention to make those early changes, the less we will have to put in the high-level resources to cope with a problem that has been exacerbated and has developed. That is the broad government focus, but it is also an important focus and crucial to the individual because the sooner help can be given, the more that can be used to support that individual's life. For all of us, making that difference to the individual is critical.

Finally, clause 2 talks about the need to expand training in the public service and ensure that that is done consistently. Again, while I think that good efforts have been made by successive Ministers of whatever Department to ensure that there is joined-up thinking, the criticism that is often levelled at government in Northern Ireland — probably not just in Northern Ireland — is a tendency of public bodies, including Departments, to operate with a silo mentality. This can be something that draws together best practice. In these things, best practice is not necessarily always what is initially thought of. I think of the Middletown Centre for Autism, which, I know, a number of Members have visited down the years. It is in a very different shape from what was envisaged a number of years ago. Plan A did not work, but plan B has been a lot more successful. Despite some of the problems that there have been, such as COVID, plan B has worked well and provided an excellent resource to families with a family member with autism. It met the challenges of the pandemic. Through Middletown, we even saw an expansion of the availability of training resources during the pandemic. There is great value in direct face-to-face training, but I suspect that, in a pandemic or post-pandemic world, there is, increasingly, a need to take advantage of a lot of online courses and the opportunities to expand that. There are others who are more expert than me on the subject to dictate what the best form of training is, but it is critical that training is made available to all who need and want it and is done on a cross-public sectoral basis. The all-party group on autism has also investigated that issue. Given the vast expenditure that government makes each year across the board on everything, it can be delivered effectively and efficiently for amounts of money that, within the public purse, are not enormous. It is critical that we get that uniformity of training and support.

I appreciate that the Committee will want to take its time to see if the Bill requires any fine-tuning, but this is an excellent start. It is not the finished point, as we said, because legislation should be seen not as a single act but as part of a process. We are taking a strong step forward today in what, I think, will be universal support for this excellent Bill.

Photo of Nicola Brogan Nicola Brogan Sinn Féin

I welcome the opportunity to discuss the Bill, and I thank the Bill sponsor, Pam Cameron, for bringing it to the Assembly. It is evident that people with autism in the North and their families and carers face severe difficulties in accessing the support, resources and proper services that they need. The support that is available throughout the North is wholly inadequate. I am glad that there is widespread support for the Bill. I am happy to support its passage through to Committee Stage. I hope that it strengthens future autism strategies and that it will make a real difference to the lives of autistic children and adults.

I also declare an interest, as a family close to me is awaiting an autism assessment for their child. They, like countless families throughout the Western Trust, have faced lengthy delays in accessing an autism assessment. I have witnessed at first hand the distress, anxiety and worry that the family has faced because of those delays and the frustration and exhaustion that come with that. That is simply to get an assessment and a correct diagnosis so that they know what support and services their child will require. For them, the journey is just beginning. They have already faced massive hurdles getting to this stage. At the start, they were told that their child was much too young to be assessed or diagnosed, and then they were advised by other people that early intervention is key. It has become a real minefield for parents and carers of young children especially. The support and guidance offered to parents and carers of young children in the North is inadequate and severely lacking.

We often hear of the importance of early intervention when it comes to supporting and developing our children, as has been mentioned already today. However, the system as it stands is completely failing children with autism and their families, especially when there are such lengthy delays to get the initial assessment. We need to ensure that early intervention is embedded in the health and social care system and the education system. I am happy to support the Bill because it will go some way to addressing those huge shortcomings, but there is still a lot of work to be done beyond the Bill.

I am Sinn Féin spokesperson for children and young people and a member of the Education Committee, so much of my commentary will focus on the needs of autistic children, but I want to make it clear that I believe that there should be increased support for adults with autism as well. I have worked closely with families, carers and groups throughout West Tyrone —.

Photo of Nicola Brogan Nicola Brogan Sinn Féin

Cinnte. Gabh ar aghaidh. Go ahead.

Photo of Colm Gildernew Colm Gildernew Sinn Féin

You mentioned support for adults and parents. A significant issue was raised at the all-party group on carers this week: the siblings of children with autism often struggle to be recognised in the education system as being carers as well as young children. That can create difficulties engaging with education. They also need attention and support.

Photo of Nicola Brogan Nicola Brogan Sinn Féin

I thank the Member for his intervention, and I absolutely agree. One of the benefits of having all-party groups is hearing evidence from different sectors and parties at play and seeing how things affect them. We should definitely consider how siblings of children with autism are affected. Thank you for that.

Although my comments will focus on children and young people, I appreciate that adults with autism need increased support as well. I want to mention the fact that I have worked closely with families throughout West Tyrone, and the work that they do is really important. I fully support their calls for increased services for adults with autism.

There are a couple of points that I will raise about the Bill. Clause 1 suggests that the Department will be obliged to consult other Departments and persons before preparing an autism strategy. That is key. It is crucial to engage with wider stakeholders and, most importantly, people with autism, their families and their carers, along with other outside groups, so that their lived experiences are reflected in future autism strategies. It is fair to say that those who have autism or who assist a person with autism and have that lived experience are best placed to identify gaps in services and to highlight the supports that they find most beneficial and those that need more development. The meaningful involvement of children with autism, their families, their carers and others in developing policy and services is critical, moving forward. Their voices need to be heard loud and clear.

As has been mentioned, clause 2 calls for autism training for civil servants and staff in all public bodies to be included in the autism strategy. Mr McCrossan mentioned the importance of autism training for staff in the police. I completely agree with that, but, as a member of the Education Committee, I am more focused on training for teachers. I will not get into the debate on whether autism training should be mandatory. The Chairperson of the Education Committee said that there were differences in opinion, and there are. I think that the Children's Commissioner is not fully behind making autism training mandatory, but it is a really important point.

When I think of autism training specifically in schools, the use of restraint and seclusion is the first thing that springs to my mind. The Education Committee heard evidence at the beginning of the year from families and organisations that are campaigning to end the use of restraint and seclusion in schools. We heard some really distressing testimonies about children with a range of additional needs, including autistic children, who had experienced those incidents. It was suggested that adequate training and proper de-escalation techniques for children with autism is one way to reduce the use of restraint and seclusion practices in school settings. For that reason, comprehensive autism training for teachers and teaching staff is definitely a good idea.

Photo of Chris Lyttle Chris Lyttle Alliance

I thank the Member for giving way. Regardless of the clarity from the Department of Education, it is probably best to note that the Assembly voted in favour of mandatory teacher training on autism.

Photo of Nicola Brogan Nicola Brogan Sinn Féin

I thank the Member for his intervention. He is right: that did happen. I support autism training for teachers. There are many benefits of such training, particularly for children and their families.

I support the Bill, but I have some concerns about the lack of reference to the educational needs of children and young people with autism. I have been contacted recently by constituents with concerns about their children with autism having been put on shortened days and reduced timetables at nursery and at school. That is really concerning, because, yet again, we are letting down our autistic children and their families. That will have an immediate and detrimental effect on children with autism and their families, so it needs to be addressed urgently. If the Bill passes to Committee Stage, I would like Health Committee members to address the specific issue of shortened school days and the question of how the Bill will support the educational needs of children with autism. I support the Bill's passing to the next stage.

Photo of Justin McNulty Justin McNulty Social Democratic and Labour Party

I will begin with a heart-warming story. A number of months back, a gentleman called Declan Carvill got in touch with me. He said, "Justin, I want you to come down to St Mark's High School in Warrenpoint to see what we are doing", so, a few weeks ago, I went down on a Sunday morning. A training session was commencing for children of all abilities, including children with autism and children with Down's syndrome. It is an understatement to say that it was a joy to behold what was on view there. The camaraderie, the warmth, the teamwork, the enjoyment, the encouragement, the laughter and the smiles on the children's faces were a joy to behold. All the parents were mucking in, the girls' team was coaching, and it was a wonderful experience. Most importantly, the parents told me that the participation in a team environment was lighting up their children's lives. Children who had been non-verbal were starting to talk. My point is that, while the Bill is very much focused on health and education, a necessary element in it is for the Department for Communities to provide support for children to be part of a team and to participate in sport.

Photo of Chris Lyttle Chris Lyttle Alliance

I thank the Member for giving way. As a youth sports coach, I have some experience of the challenges faced in delivering coaching in the excellent way that he described. Maybe we can discuss it with the Bill sponsor later in the debate, but does the Member agree that there may be scope in some of the clauses to include an amendment on training and information for sports coaches to ensure that coaching is provided in a way that enhances the experience and includes children with autism so that they can enjoy sport and develop their skills?

Photo of Justin McNulty Justin McNulty Social Democratic and Labour Party

I agree fully. The thrust of the Bill is to allow every child to shine, and I thank and commend the Member for bringing it to the House. My God, were the children on that Sunday morning at St Mark's in Warrenpoint shining, and so were their parents and coaches. They have created such a wonderful environment there, and they do it every Sunday. It is powerful. It is not just players from Warrenpoint who are involved. Players are coming from Burren, Hilltown, Mayobridge and from afar. It is wonderful.

I acknowledge Dominic Bradley, my constituency predecessor, for sponsoring the Autism Bill in 2011 and former constituency colleague John Fee, a man of strong principle who was beaten up by local "heroes" to within an inch of his life for having those principles. He was the first Member to bring the issue of autism to the Chamber.

Autism's impacts are far-reaching and impossible to ignore. Just under 5% — one in 22 — of school-age children have an autism diagnosis. Approximately 25% of individuals with autism have an accompanying learning difficulty. Just 16% of autistic adults are in full-time employment, despite individuals with autism having the ability, the skills and the will to be employed. Over 4,000 children are on a waiting list to be assessed.

All of us here know the volume of cases that come through our offices from parents who are at their wits' end and are looking for the support that their children not only need but are entitled to. Education is those children's human right. On that basis, I welcome the provisions that set out how the Department will make provision for an early intervention service and how the needs of adults with autism will be addressed, particularly in relation to employment, learning, emotional and mental well-being and supported living. The Bill will create the position of autism reviewer, whose responsibility it will be to ensure and monitor the implementation and effectiveness of the autism strategy. It will also bring international best practice to bear on our autism strategies and provide for annual reports on autism funding.

Far too often, we view disabilities such as autism through the lens of statistics and numbers. Behind those statistics are children and adults who have shown us for generations that they have limitless potential and an ability to literally change the world — to put a ding in the universe. It is therefore a damning indictment of us all as a society that only 16% of individuals who have autism hold full-time employment. We are not allowing those people to shine.

Far too many families feel forgotten and ignored. Too many bureaucratic quagmires impede the ability of people with autism to reach their full potential, to allow them to shine. The demand for autism services is overwhelming. Government needs to ensure proper resourcing to meet the need and ensure that no one falls between the cracks for want of support. Every individual with autism deserves the chance to live up to his or her full potential. The role of government should be to remove the obstacles in their way and give them a fair run to let them shine.

I started with a heart-warming story, so I will finish with another. I saw this story in 'Armagh I'. It is not only inspirational, it is uplifting. It gives you great hope in humanity. A member of the public recently wrote to the principal of Jonesborough Primary School, Donal Keenan. The letter read:

"My name is Amanda Gilligan. I was in Jonesborough playground on Friday afternoon with my three sons when six students from your school arrived by bike. My oldest son Davie, who has autism, and is working with thus far limited success on social boundaries made a beeline for them. He began his habitual intense questioning about names, addresses and family. The lads were clearly there for a post school chat with their mates and I was concerned that Davie might irritate them or, being honest, that they would be mean to him. To my pleasure and surprise the boys talked happily with him and even took part in a race at his suggestion."

Ms Gilligan said that such kindness and inclusion was not always their experience. Her letter to the principal continued:

"[I] wanted to let you know so you might pass on my appreciation and perhaps use the opportunity to have their teacher talk a little to their class group about differences being ok and the big impact individuals can have on making the world a better, nicer place. Their names were Brogan, Nathan, Darren, Callum, Keane and Brian. They made his day! Thanks so much and keep up the good work."

Those boys, their teachers, classmates, community and parents have the right idea. They are doing things right. Those boys allowed Davie to shine. That is the challenge for all of us: to put in place the supports to help every child to shine. Then, as a society, we, in turn, can shine. That is the challenge for all of us.

Photo of Robbie Butler Robbie Butler UUP

My remarks will be brief. It is a privilege to follow Mr McNulty, whose words were excellent. He gave us really good examples of real-life impacts and of some of the good stuff that goes on. It is always a wonder how he is able to get in GAA sports as the fix-all. However, Justin is absolutely right that other outlets, parents and organisers of sports already lead the way in some of the things that can be done to support those with autism: children, young people and even adults.

I am thinking of an initiative that was started recently in Portadown by Hanover FC, which runs a very similar sporting outlet for children who have autism and other challenging issues. Ballymacash Rangers in Lisburn has also run events like that.

As a legislature, we need to embrace what is in front of us today. I must go on record to thank Pam, the chair of the APG. That APG was one of the first ones that I signed up to in 2016. We have all aged a little bit since 2016, particularly me. I had brown hair back then; it is silver at the sides now. A few others in here may have changed a little bit since then, too. The deputy chair, Cathal, to be fair, has been robust. The APG has been collegiate the whole time. I am not being rude, but I cannot mention all the members, because it has been a well-supported APG. This Bill has been a while in the making, and it is great to be here today. It is really good to be in the Chamber when, across the House, we are hearing very similar remarks. We are finding broad support for what is in front of us today. Behind the scenes, we have support from the secretariat, Autism NI in particular and the National Autistic Society. Without their advocacy, this would not be possible. They speak on behalf of many parents and young people.

The APG held evidence sessions, which were priceless, and the information really came home during those sessions. We have heard lots of statistics on prevalence and so on today, but those things are kind of cold, because, unless you have had that personal experience, you are talking about a number. When we had those evidence sessions, we talked to carers, parents and people who have autism and heard about the real-life experiences and challenges. That is probably what gave us and Pam the energy to put the Bill together. I thank Pam, the members of the APG, the secretariat, the National Autistic Society and those who have contributed to the Bill getting this far.

I also want to thank the Minister. I do not say this because he is a Minister from my party; I will thank whoever deserves credit. In the midst of a COVID pandemic, and in the midst of other priorities like mental health and so on, the Minister has seen this as a priority and has, in this mandate, already started the ball rolling, and I know that he will be behind creating good legislation here. I thank him for that.

I was going to say that one thing had not been covered, but Justin, to be fair to him, covered it. We have talked about the prevalence. The other thing is the life opportunities and the pressures, whether educational or in the workplace, on people who have a diagnosis of autism. It is good to see that that has been recognised in the Bill and can be built upon. Proposed new subsection (4A) tilts us towards that cross-departmental working. This is a cradle-to-grave approach. We should not just be looking at this in the context of the education piece at the start, albeit the start is probably the most important piece, and support needs to be there for the young people, their family and those around them. The systems need to be there for those people, whether in our schools, further education or higher education colleges for transitions into work, and we need to ensure that we have created the greatest scope of opportunity for those people. We will be giving them hope, too. We will be putting them front and centre of our discussions and will be creating, hopefully through cross-departmental working, opportunities for them to genuinely live their best life.

I am looking forward to the Bill going through Committee. The Chair of the Education Committee made a good point, saying that we can make amendments to the Bill, not to take away from it but to add to it and perhaps champion, in the Department for Communities or wherever it may be, the need to make sure that our priority is the quarter of the service users who may need that additionality. That would be a useful addition to this, and we need to be proactive about it.

I will close on this point. I do not want to get too far into the debate on education and teacher training. We were pretty collegiate in the Chamber with regard to that. We visited Middletown a number of years ago, and the former Minister of Education has put the case well that when something is birthed, it can change, it can be agile and it can be better, and we need to be mindful of that. The Bill, which is at Second Stage, gives us a really good blueprint to do something that will make a difference to the lives of those people who need our support. We will support the Bill.

Photo of Pat Sheehan Pat Sheehan Sinn Féin 12:30 pm, 21st September 2021

I welcome the opportunity to speak on the Bill and in support of the policy objectives that it intends to achieve. At this stage, most of what I wanted to say has already been said. Nevertheless, I thank Pam for bringing forward the Bill and the APG on autism for its work in helping to drive it forward.

I want to use my contribution to focus on the need for enhanced cross-departmental working on autism support and services, particularly in Health and Education, and to look at how that can be strengthened through a new strategy. Justin McNulty raised the need for the Department for Communities to be involved as well. In all likelihood, all Departments will have some role to play in developing the strategy in the time ahead.

One in 24 children in the North receives a diagnosis of autism. Their journey through education and how they are supported on that journey is crucial so that we can ensure that they all have access to the same opportunities as their peers. Statistics also suggest that 25% of those presenting with a diagnosis of autism will also have some other learning disability. The challenges that those children face must be met with an ambitious strategy that encompasses their health, social and educational needs. Our education system is one cog in the wheel of supporting our children with autism, but that cog cannot support or deliver for those children in the absence of a timely diagnosis.

Many MLAs across the Chamber will have heard from distressed families who are their wits' end, having waited for up to three years for a diagnosis of autism. When it comes to supporting and developing our children, we hear, time and again, how critical it is that early intervention is made. We have a system that is failing countless children and their families from the very outset. We need to fix that and ensure that early intervention is embedded in the health and social care and education systems.

Key to the success of any strategy for supporting people with a diagnosis of autism is accountability. The Audit Office recently published an impact review of special educational needs in the North. One of its conclusions, that neither the Education Authority nor the Department of Education could demonstrate value for money for the vast sums of money that had been spent — up to £1·3 billion over five years — was startling. Agencies and Departments cannot just throw money at special educational needs. Our children deserve strong and accountable leadership that offers a strategic vision for how they will be supported during their educational journey. While Health may take the lead in delivering the strategy, it must be done in collaboration and partnership with Education and others.

From an educational perspective, some pressing issues could be resolved in the interim that could have a positive impact on the school experience of children with autism and their families. The Department's policy and guidance on the use of restraint and seclusion are not fit for purpose and should be done away with immediately. In recent times, the Education Committee heard shocking testimony on the use of restraint and seclusion. Even more worrying was the lack of statutory guidance on the monitoring and recording of such incidents in schools.

Last year, the Assembly supported a motion on mandatory autism and special educational needs training for school staff. I listened to the Chair of the Education Committee intervene on a number of occasions today, and he correctly made the point that the Assembly voted in support of that mandatory training. Our teachers want to be equipped with the necessary skills to support children with autism. Given the objective in the Bill to provide information on autism training for staff and public bodies, we should explore, in consultation with the teaching unions, how we could advance that and, indeed, go further for our school staff.

We must support people with autism from the earliest possible moment. That is why Education must take a prominent role in the development of any longer-term strategy in this area. I look forward to, hopefully, engaging further on the development of the Bill and advancing the policy objectives in it.

Photo of Chris Lyttle Chris Lyttle Alliance

One of my most valued and remembered early actions as an MLA was to vote in favour of the 2011 Autism Act. Despite that significant step forward, too often in my role as an MLA, I have been engaged to assist with the consequences of the dysfunctionality of the public services and support that is available to children and families with autism in Northern Ireland. I have spent much of my service as an MLA seeking improvements to that provision and seeking fairness and equality for children and families with autism.

I am privileged to be a member of the all-party group on autism, and I would like to recognise the work of autism organisations on that group, such as Autism NI and the National Autistic Society and some notable individuals such as Arlene Cassidy, Kerry Boyd, Eileen Bell and Shirelle Stewart, who drive advocacy on behalf of children with autism in Northern Ireland. I also recognise the key work of Autism NI's 'Broken Promises' report and, of course, the commitment of the all-party group on autism chair, Pam Cameron, to this important area of work. I congratulate Pam on the work that she has done to get the Bill to Second Stage. I regret that the lack of implementation of the Autism Act (Northern Ireland) 2011 has made the Autism (Amendment) Bill necessary, and I will be glad to support the Bill on behalf of the Alliance Party, further to my colleague Paula Bradshaw's important contributions today.

The Autism (Amendment) Bill will build on the 2011 Act by introducing measures to remove ongoing barriers to full implementation of the law. We need independent scrutiny to drive forward autism strategies, and we need an autism reviewer. We need improved data on adults as well as children with autism. We need an autism training plan, particularly for teaching staff, front-line health services, employer training and the development of regionally consistent autism information. In that regard, as I mentioned earlier, I would be interested in discussing further with Pam, as the proposer of the Bill, whether there is an opportunity to specifically reference sports coaching in relation to clause 2, in terms of training and information services provided. I have seen, at first hand, how team sport can be a particularly challenging area for young athletes with autism. The more informed and equipped sports coaches can be in that regard, the better the experience and equality of opportunity for young people with autism would be in that context.

Too often, the support services that are offered to a newly diagnosed child vary considerably from trust to trust. We need regional consistency in relation to support services. The principle of the Bill that the autism strategy must have measurable targets and outcomes is absolutely vital. The autism strategy must be developed in consultation with the autism community. I particularly welcome the independent scrutiny mechanism that would ensure effective monitoring of the autism strategy and the effectiveness of funding, law and practice relating to autism and would review the effectiveness of services provided.

The least that children and adults with autism can expect from the Executive and the Assembly is fairness, equality and best practice support. It is important to acknowledge that the fairness, equality and best practice provision that we seek for children and adults with autism must also be extended to all areas of special educational needs, as has been mentioned by other Members.

Photo of Sinéad Ennis Sinéad Ennis Sinn Féin

I appreciate the Member giving way. On that note about equality, Members will be shocked to learn that there are no autism-specific learning centres in any of the post-primary schools in Newry and Mourne. If we are serious about getting this right, as Members have rightly suggested that we should be, we cannot allow inequalities, such as those that exist in my area and probably in other areas, to persist.

Photo of Chris Lyttle Chris Lyttle Alliance 12:45 pm, 21st September 2021

I thank the Member for that intervention. There is a real issue with the location of support centres. As the Member acknowledged, that is perhaps the case geographically, but it is also the case in terms of type of school. That is something that should be explored.

I welcome the Second Stage of this Bill today. I regret the need for it, but I will give the passage of the Bill my full support.

Photo of Cara Hunter Cara Hunter Social Democratic and Labour Party

I welcome the opportunity to speak in my role as my party's health spokesperson in support of the Bill.

I thank Pam Cameron, who is the Member responsible for bringing the Bill forward, and everyone who was involved, especially Autism NI and the all-party group on autism. They have worked tirelessly for years to support and advocate for so many people with autism and their families. I also thank the Minister of Health for being here today and for his ongoing support and activism on this issue.

At the end of last year, almost 4,500 children in the North were awaiting an autism diagnosis. That is not only alarming but heartbreaking. We are failing our children because of the lack of support that is available, and that is made even worse by the fact that some of them have been waiting for well over two years. Those delays have a huge detrimental impact on not only academic achievement but the confidence and self-esteem of our little ones amongst their peers. That can cause damage into adulthood.

The Bill being discussed today will assist profoundly in making our society autism-inclusive and will undoubtedly contribute to a more fair, equal and just society. I especially welcome clause 5, which introduces the idea of an autism reviewer role to review functions in relation to autism and to hold the Department accountable for ensuring that the needs of those with autism are met. I note that the disparity in waiting times between different trust areas is a huge issue, as are the health inequalities that arise as a result of the waiting lists. Some families are able to afford to pay for a private diagnosis for their children, while others simply cannot.

Let us look at the numbers that we are talking about when it comes to children with autism in our society. Almost one in every 20 school-age children in Northern Ireland has been diagnosed with autism. That is 13,000 children between the ages of four and 15 with a diagnosis of autism. That is a large part of our population that we all must do better for. At last week's Health Committee, Pam noted that autistic adults feel left behind. I welcome the inclusion of education and training for mental health professionals, which is badly needed, especially with the sad and unfortunate statistics around suicide for autistic individuals. Recently, in my constituency, I met with Destined, which is an incredible charity that is committed to helping those with autism and other special educational needs to prosper and grow and to teaching them life skills. That is something that is very hard to find, specifically in rural areas, due to a lack of funds or limited funds.

It is important to raise as many personal stories as possible in the Chamber as a firm reminder of the neglect that families in rural communities feel when it comes to support for special educational needs. One lady in a very rural part of my constituency has a young teenage daughter with autism who, well into the second week of September, had no school placement. That is absolutely disgraceful.

At a school that I visited last week it was said that, "At least a quarter of our class could avail itself of a special educational needs teacher, but where is the money? We need more support from our politicians on the hill". For generations, people with autism have been failed by politicians in this Building. Let us not allow that to happen again. I regret that the Minister of Education is not here, because it would have been of great benefit to her to hear some of the stories today. The SDLP fully supports this Bill at its Second Stage.

Photo of Mark Durkan Mark Durkan Social Democratic and Labour Party

I am glad to speak on this private Member's Bill, which, I hope, will provide a springboard to the creation of a more equal, supported and fulfilling environment for individuals with autism, their families and their carers. I must pay tribute to the all-party group on autism and, in particular, to the Bill sponsor, Pam Cameron, for ensuring that the experiences of people with autism are heard and for bringing this private Member's Bill to the Assembly.

The Bill is a vital addendum that will strengthen the Autism Act 2011 and see much-needed improvements, including early intervention and information services, as have been mentioned. Sadly, the potential of the Autism Act (NI), which was championed and brought forward by my party colleague Dominic Bradley, to transform people's lives has been compromised by a lack of not only financial support but ministerial decision-making over the past decade. While public awareness around the issue has improved massively during that time, that is thanks in no small part to organisations like Autism NI and the National Autistic Society and others in my constituency like Parents of Older Children with Autism (POCA), the Jigsaw Project, Circle of Support, and their members. It is painfully clear that services and legislation here have not kept step with the needs of individuals with autism.

According to the National Autistic Society, its members attest that the one thing that would make the biggest difference in their daily lives would be if people understood autism. That is simplistic, but, nevertheless, it is a vital starting point. It is our responsibility here today to ensure that a vision of understanding is enshrined in law. To understand is to listen. I am content that much of that work has been informed by and done in conjunction with those who have a lived experience of autism. The nature of co-design is a key component here. That first-hand contribution must be at the core of the legislation to ensure its effectiveness. It is not enough to just be aware; rather, it is incumbent on all of us to listen to, respect and include people with autism. Clause 2, which concerns additional components of the autism strategy, does just that. In particular, the focus on the role that is played by public bodies is critical. All those who provide a public service throughout the North should be trained to appreciate the challenges that are faced by people with autism, whether that is in the workplace, in schools, on public transport, or in the provision of healthcare.

The need for greater training and awareness in relation to autism has been recognised in all jurisdictions, particularly among front-line workers and especially among health and education professionals. Mandatory training for front-line workers must be more than just a consideration. The Bill is an opportunity for the North to be a leader on these islands with regards to best autism practices and the creation of a more inclusive society. That opportunity must be grasped. Ensuring that the needs of adults with autism are met in terms of lifelong learning, employment support, well-being, and facilitated supporting housing opportunities are all integral cogs in the support framework for individuals and their families.

Evidently, the Bill is cross-cutting and requires a multidisciplinary and consistent approach across all Departments. Sadly, we have not seen that to date. The role of the autism reviewer to monitor the implementation and effectiveness of autism legislation is important. While I appreciate the reservations that have been expressed by the Children's Commissioner and others about clause 5, I argue that the prevalence of autism demands radical thinking. An independent reviewer would improve accountability, working alongside the existing scrutiny mechanisms. However, the crux of that work is the creation of an early intervention service. The sooner that an ASD diagnosis can be given, the sooner that support services can be accessed.

It is clear that autism services across the North are at breaking point. Some of the figures have been quoted here today already. Figures that I obtained recently from the Health Minister via a question relating to ASD assessment waiting lists for children are testament to a system that is in absolute chaos. As of March this year, around 4,500 children here were waiting for an ASD assessment. In the Western Trust alone, there were 1,085 patients on the waiting list, 527 of whom had been waiting for longer than a year. That represents 4,500 children struggling in a class of their peers, frustrated with the added turmoil caused by lockdown and left without the additional support that they desperately need. It represents 4,500 families battling for answers, trying their utmost to secure assistance for their children. The system has failed each and every one of those.

It is unconscionable that children and their parents live with uncertainty, without a statement and, more importantly, without the critical support that follows one. Not having that crucial diagnosis or the assistance that comes with it is distressing itself but now, with the impact of COVID, their chance of getting a diagnosis has been pushed even further down the road. These delays are nothing new, and it is lamentable that adequate care pathways, both before and after diagnosis, are yet to be established, despite knowledge of the issues laid out in the 'Broken promises' report by Autism NI, that other Members have referred to, written prior to the Executive's collapse. As a result, an improved framework could not be implemented, leaving access to autism services in a state of inertia.

This is an area marred by historic underinvestment, and funding, thus far, has failed to match or come anywhere close to the increase in demand, year on year, for autism support and services. These staggering figures are, in part, born out of the pandemic compounding already dire waiting lists. Given that access to autism services was already under immense pressures, the exponential increase in demand means that the needs of many children and their families have not — and, sadly, will not — be met. This will undoubtedly impact on their ability to do things that most people take for granted, particularly with regard to education, making an already frustrating and lengthy process even more stressful.

It is imperative that this area of underinvestment be addressed by the Executive. We need to create a fit-for-purpose system — a system of understanding that meets the needs of autistic individuals and their families. That begins with early diagnosis. No child should be neglected on colossal waiting lists and fighting for the support to which they are entitled. Nevertheless, clause 4, the annual report detailing how autism funding will be allocated, is a welcome and necessary inclusion in the Bill.

While obtaining diagnosis, an often laborious process, is just the first step, it is important that the support provisions post diagnosis are also properly resourced. Figures, again from Autism NI, and quoted by Ms Hunter, show that one in 22 children have an ASD diagnosis. That is at least one child in every classroom, many of whom are, or will be, in mainstream education, which further underscores the importance of mandatory autism training for all teaching staff — a commitment made in this Chamber in February last year and referred to by Mr Sheehan. The phased implementation of a new special educational needs framework will go a long way, I hope, in providing assurance that people with autism are supported throughout every step of their education.

No conversation on autism can be had without acknowledging the toll that the past 18 months has taken on people with autism and their families. Lockdown and its aftermath have undoubtedly impacted on all our lives but, for those living with autism, this period has been fraught with unimaginable challenges. The National Autistic Society's report, 'Left Stranded', presents stark evidence of that. I have personally listened to some heart-wrenching stories from families who struggled throughout lockdown without respite and with limited access to services. For many households where routine is golden, this monumental shift in their daily lives, and coming to terms with the new normal, has been hugely detrimental. The findings in this report show that the events of recent months have had a disproportionate, and often devastating, impact on the mental health, well-being and education prospects of people with autism and their families. Again, it is clear that the autism strategy explicitly looks at a new funding model.

We cannot rest on our laurels where the delivery of effective and accessible autism services is concerned. A system establishing the needs of autistic individuals and their families to cope with the repercussions of COVID-19 and beyond is key. While I agree with the sentiments of this Bill and the ambitious ideas set out on paper, putting those plans from paper into practice to deliver real change and benefit to people's lives requires the provision of adequate funding. The outworkings of the autism strategy cannot be left battling for financial support and investment at every juncture.

In conclusion, as a society, we have made huge leaps in improving support and developing our understanding of the needs of people with autism, yet we are nowhere near the finish line, and today's debate has brought that very much to the fore. The envisaged future of an enlightened, inclusive society depends on the creation of communities in which those with autism, their families and their carers can feel safe, included and understood in every aspect of their lives. Going forward, the Executive must promote the positives of employing people with autism and ensure that advice on supporting those individuals is made available to employers.

I am conscious that it is lunchtime. Given that autism affects so many areas of government, it is difficult to address them all in such a short space of time. I could opine where we need to go, what we should be doing and what not to do. Suffice it to say, however, we support the Bill and look forward to its passing Second Stage.

Photo of Roy Beggs Roy Beggs UUP

The Business Committee has arranged to meet at 1.00 pm. I propose therefore, by leave of the Assembly, to suspend the sitting until 2.00 pm. The first item of business when we return will be questions to the Minister of Education, after which we will return to the debate, where the first Member scheduled to speak is Gerry Carroll.

The debate stood suspended. The sitting was suspended at 1.01 pm.

On resuming (Mr Speaker in the Chair) —