Debate contribution: Autism (Amendment) Act (Northern Ireland) 2022

Debate contribution by Ms Cheryl Brownlee on 30 April 2024.

MLA

Ms Cheryl Brownlee

Party at the time

Democratic Unionist Party

Date

30 April 2024

Type

Debate contribution

Business

Private Members' Business

Heading

Autism (Amendment) Act (Northern Ireland) 2022

Assembly identifier

Official Report component 4487721

Read the official Assembly record

Text

Before I begin my winding-up speech, I will touch on a huge issue, which is the waiting period for the parents and children who need an autism diagnosis. As an MLA for East Antrim, I know only too well the importance of the new autism strategy and how it can improve the lives of autistic people in Northern Ireland and their families. Like many Members, I am inundated with requests for support. Many families do not know what to do or where to go after a diagnosis, and it is often left to the voluntary sector to help support those families. Even before diagnosis, there is an arguably more stressful time, which is the waiting period. The waiting list for diagnosis for children and adults can top up to five years in some health trusts. We all know that early intervention is key, and it is often discussed on the Floor. The delay in diagnosis is undoubtedly affecting children's development or adults' mental health. In the new strategy, there is very little mention of how the waiting lists will be addressed. We cannot have families and autistic adults waiting for years and years. It is not fair, and, quite frankly, it is dangerous, given the disproportionately poor mental health of those in the autistic community.

Some people and families are being forced into paying for a private diagnosis. That, in turn, causes a huge health inequality. There are those who can afford to shell out £1,400 and those who cannot and will have to wait years for the service.

The strategy delivery plan says:

"Recognising that referral for an autism assessment process may create anxiety and be lengthy, we will provide and publish improved communication and relevant information which will set out step-by-step guidance on each step of the autism assessment process."

Whilst that is well intentioned, it does not address how we will reduce waiting times for families. The NI autism strategy says that there will be an investment in adult assessments, and I hope that that is progressed as soon as possible. Equally, I cannot see where the strategy addresses the long waiting list for children. The last financial investment in assessment was over eight years ago, in 2016, and we all know now that there are more children and adults coming forward than ever. It makes sense for us to invest urgently in this area. Section 3(4E) of the 2011 Act, as amended by the Autism (Amendment) Act 2022, states clearly that:

"The autism strategy must set out how the Department will reduce waiting times for autism assessment and treatment services provided by HSC trusts."

However, for children, that seems to be ignored in the current autism strategy delivery plan. I ask the Minister this: what are his plans to address that requirement under the legislation? I thank all Members for their comments on the motion. From a personal perspective, I deeply care about the subject. We touched in the debate on the stigma. A few months ago, I went into a cafe with my son, and he had a meltdown. He was on the floor, crying and going crazy. I looked across the room and could see people looking at me and eyes rolling. Sweat was pouring off me. I did not know what to do. A girl whom I know through work came up to me and just said, "Go away and sit down. I will bring over the coffee and your milk". I sat there in tears. The associated stigma is a huge thing, Minister, not just for the children but for parents and siblings. It affects absolutely everybody. I know that this is difficult today and that you may feel that we are all targeting you, Minister, but this is a huge issue. I ask you to treat the matter as a priority. Autism spans across and hits every family in Northern Ireland in some shape or form. It will differ from family to family, but it has a huge effect on every family. My colleague Deborah touched on the disappointment that is felt, and we are all extremely disappointed. We are all aware that there are budgetary pressures, but, if we prioritise everything, we deliver nothing. In my view and, I think, that of most Members, it would be so easy for us to achieve something with the autism reviewer. Some £36,000 or £37,000 is a drop in the ocean. It is very little, but it will have a huge impact, Minister, and I ask you to look at it again. Deborah also commented on measurable targets. We know from the Public Accounts Committee (PAC) and the Northern Ireland Audit Office (NIAO) that the Department of Health lacks data. We see it in waiting lists and here today. There is a significant lack of data, which is critical for us to make important decisions and back them up. We could show that what we do and invest in makes a difference to people on the ground. Strategies are all very well and good -- I have heard the word "strategy" more in the past 12 weeks than ever in my whole life -- but we want to see delivery. We want to see the lives of people on the ground change for the better day and daily. My friend Cathal is Chair of the APG on autism. He has been around for 17 years. He has seen this before and is frustrated. He wants to see delivery again on the matter. He touched on the need for a review of capacity and demand, collaboration, monitoring, resources, delivering the strategy and the Act. My colleague in East Antrim Danny Donnelly said that we know that we need to treat the matter as a priority. He detailed the cross-party support that we have had and mentioned all the Members who continue to fight to bring autism to the Floor as an issue. He also talked about training for staff, bodies and workplaces, which will be absolutely key. He referred to looking at best practice elsewhere, not just in Northern Ireland, at where is doing this well and how we can replicate that in Northern Ireland. He mentioned the 22% employment rate for autistic adults, which is absolutely horrendous. If the motion is passed today, the reviewer will have a huge impact on that. Alan Chambers mentioned timely diagnosis, help, support and, in particular, the education system. Mark recognised the huge gaps in provision and detailed the failings that we are all very aware of. He talked about how critical mental health is and told us that an autistic adult is nine times more likely to commit suicide and an autistic child is 20 times more likely to self-harm. Those are horrendous statistics. We all know them and talk about them constantly, but what are we doing to address them? He also mentioned the i-THRIVE programme. It is a good programme, but it is very general and is not specific to the autistic community. Danny Baker rightly touched on education. He talked about the impact of education provision on children with autism and about the right training for teachers, parents and support staff. Pam, who worked hard to deliver the Act, particularly in conjunction with Autism NI, talked about the training that is needed, the data, the budget, the reporting and, of course, the independent reviewer. There is disappointment that, despite the work that not only Pam but everybody has put in over a number of years, we are not seeing results on the ground. She also mentioned the fearful, worried and anxious families whom we often see in our constituency offices. Maolíosa McHugh from West Tyrone talked about support groups. He also touched on the voluntary and community sector, which is essential in doing the work when families cannot get access or are waiting for a diagnosis. The voluntary and community sector is a pillar, but, unfortunately, it often experiences significant cuts, which has a huge impact on the ground for all. He also mentioned lifelong learning, housing and employment, which, again, is critical. Colin talked about cross-departmental working, the autism reviewer and commissioning services. We have touched on the importance of the reviewer a few times. PIP is also a huge issue. The forms are complex and wordy. It is hard for anybody to comprehend them and go through them. The emotional struggle of doing a PIP form can have a significant impact on an autistic person, so we need to look at how we can make that process more supportive and accessible for people. I do PIP forms quite regularly, so I know about the stress caused to people when they have to go through that process, which may be followed by a mandatory reconsideration, an appeal and then a tribunal. The process for accessing basic support is far too drawn out.

Yes. To everyone who is here today, thank you very much for your support. This is a fundamental issue. It is about investing to save. It is critical that we act right now. Autistic children and adults are a vibrant part of our community today, as they will be in the future, and we are failing them. They are our friends, neighbours and colleagues. They deserve the same rights, support and opportunities as every other person in Northern Ireland.

Sorry.

1,560 words. Text as published by the Northern Ireland Assembly.

Assessment

Not flagged

Jev’s structured answers

Assessed 21 October 2026 at 10:03 UTC by jev-1.13.0 (requested as typesafe/jev) under rubric 2026.10-r9, methodology 1.9.

Disagree with this assessment?

Classifications can be challenged. A person reads every challenge, and any change is recorded publicly above with its reason.

Challenge this classification