Tania Tirraoro, Alice Willans and Anita Harrington.
Q85 The Chair: Good afternoon and welcome to this public meeting of the House of Lords Committee on the Autism Act 2009. In this evidence session, we will hear from witnesses with lived experience of improving access to education and transitions to adulthood for autistic children and young people.
We are delighted to be joined by Tania Tirraoro, founder and co-director of the Special Needs Jungle Limited; Alice Willans, chair of the Ambitious about Autism Youth Council; and Anita Harrington, who will be sharing her experiences as a parent. Thank you so much for joining us, and you are all extremely welcome.
Our evidence sessions are on the record, which means that they are broadcast, and a written transcript is taken for subsequent publication. The list of Members’ declared interests has been published on the committee’s website.
Having made that introduction, I will ask the first question. If you would like to do so, please give your pronouns when you introduce yourself. The first question will be: could you say who you are, and could you then say why improving access to education and transitions to adulthood for autistic children and young people is important to you?
Alice Willans: I am 25 years old. I am autistic, and I have a moderate learning disability. When I was 10 years old, I received an EHCP, and I attended three mainstream schools and one special school. I am passionate about autism advocacy, and I am currently chair of the Ambitious about Autism Youth Council.
I have experience of education in mainstream and specialist settings. I went to a mainstream primary school, and then a mainstream secondary school until year 9. I do not believe I accessed education in a meaningful way until year 9, when I moved to a LAB special school. This is a school for children with moderate learning and additional needs—90% of the children in this school were autistic.
Academically and socially, in mainstream schools, I felt socially isolated. I felt different to everyone else, and I was unable to learn, despite wanting to. I appeared passive, confused, disengaged and frustrated. In our family we believe that, had we not intervened, the secondary school would have just kept me on a road to nowhere, as GCSEs were unattainable, and it did not have anything to offer in their place.
If only I had been a challenge with behaviour, maybe someone would have taken action—but in the end my family did, calling an emergency annual review in year 9. Only then, when I went to my special school, did I learn how to make friends and experience the joy that friendship brings, and I really thrived. I was the model student. I began learning and making progress towards entry-level qualifications. Importantly, I began to understand my autism so much more and I felt proud of who I am.
As an adult, I have met other autistic people who were not as lucky as me. They were not in an education setting that was right for them. In fact, many of them were in mainstream schools, when they should have been in specialist schools. As adults, this group are among the most lonely and isolated I know. I met these people at colleges I attended, so in the end we were in the same place, but my experience in my special school put me in a much better place academically and socially. For example, I developed hobbies and interests such as Lego, gardening and football. In school, I had not needed to try to fit in. I could be myself so that, as an adult, I now have hobbies, interest groups and communities that I am part of and that enrich my life.
The Chair: Alice, thank you very much—I will come to Anita.
Anita Harrington: I am the parent of a late-diagnosed child. My son was 15 and in year 10 when he was diagnosed as autistic during lockdown. He is, however, now at university.
Improving access is important to me because I have seen a child go through education and start a transition to adulthood, mainly undiagnosed. I have seen the struggles and the lack of support that he had, and I want to improve that situation for other people. The system needs to be fair and supportive to everyone, but especially to autistic young people. If we want autistic young people and children to thrive, we have to support them.
The Chair: Anita, thank you very much indeed. I will move to Tania.
Tania Tirraoro: I am late-diagnosed autistic; I was diagnosed at 45. I am also the mother of two young autistic adults in their mid-20s who also have ADHD. Like me, they also have Ehlers-Danlos syndrome.
I founded Special Needs Jungle, a volunteer-run website, back in 2008, after my youngest got a statement. It helps anyone involved in SEND to navigate and understand the issues with the SEND system. For example, I have got a brilliant team of volunteer writers, and we were the first to identify issues, for example, with the SEND safety valve system. I am also on a number of national SEND advisory groups.
I am also a grandma of two. They are likely to be neurodivergent, so getting neurodiversity services right is vital to make sure they get the support they need. I also want to see better support for autistic adults who are trying to get into employment. My son works; my daughter is still at home. I want them to be able to thrive in further or higher education, but too often they are let down and this can have disastrous consequences. Unfortunately, all we are seeing at the moment is that this Government seem to be more keen on taking away support—whether that is financial or access to work, for example—than removing barriers to employment.
The Chair: I thank all of you for setting the scene.
Q86 Baroness Pitkeathley: Thank you very much for coming. When I put my question, I am going to come first to you, Tania, then to Anita and then to Alice. The Government’s autism strategy of 2021 to 2026 aims to improve access to education and transitions to adulthood for autistic children and young people. What impact, if any, has the strategy had and why do you think the strategy has been effective or not effective?
Tania Tirraoro: In local authorities, you can now see all-age autism strategies and autism partnership boards, and a greater awareness, I think, of the needs of autistic people—although there are lots of other things that have impacted on that, such as Siena Castellon’s Neurodiversity Celebration Week.
The difficulty is the wide range of abilities and capacities of autistic people. For some, the day centre and easy-read documents are useful, but others are more impacted by an ableist environment, for example, and you can see less improvement there. It is good that there are now autistic diagnostic services, but it is not so good that you have to wait for years to be seen. In some LAs, barriers for children are increasing. For example, in one LA, you need to show six months’ worth of educational support before you can be added to the neurodiversity waiting list.
Then, when you are diagnosed, too often there are no services. It is like saying, “Yes, you are autistic now. Goodbye and live your life without any help”. So grand strategies are lovely, but when you look at how they are transferred to schools and colleges, it is harder to see any impact. Any strategy can only work if there is the funding to do it and the will to make it happen in a joined-up way. That is across health, education, social care and employment services.
In my experience, while there is greater awareness, more training and more duties, the financial challenges and the culture of many results-driven schools have kneecapped any progress. Lots of schools want to do the right thing, but they cannot afford it. Some schools, thanks to the ethos of the staff and leadership, really are deliberately inclusive and warm places, despite the challenges. So, if you are in one of the former: hard luck, find a better school. If you are in one of the latter ones, you really have, at least in primary, a chance of getting to secondary school, where you may then again be failed.
Baroness Pitkeathley: Thank you very much indeed for that, Tania. Can we come to you next, Anita, please?
Anita Harrington: I am not familiar with the situation prior to the strategy being in place, because my son was not diagnosed until the end of 2020. That said, we did not see any dedicated support when he was diagnosed. I had never heard of this strategy and, in the circles I move in, no one else had heard of it either, so it is really difficult to judge its effectiveness.
Talking to parents at various events, I find that it seems to be down to the individual education provider to decide what support they offer, what they do not do and how inclusive they are. To be fair, even if they recognise autism, there are some scary things happening. There is no standardisation in the support that people get or even are offered. We were not given any specific ideas or options at diagnosis, so we did not know what would help. We had no idea what would help; we were faced with a diagnosis that we were not familiar with. We did not know what was available and we did not know what would be useful for him.
We had to use trial and error based on what we were suggesting, not what the school or the local authority were coming up with. Actually, looking back, I am sure our son could have had much better support than he did, given that it was negligible. But, ultimately, as parents—like him as an autistic young person—we do not know what we do not know.
Alice Willans: I do not think it has been effective for me for the following reasons. In 2021, when the strategy was launched, I was doing a level 2 vocational course in horticulture. I needed time to work through and resit maths and English at functional skills levels 1 to 2, and then GCSE maths and English. I needed to repeat horticulture at level 1 as well, as I needed to overlearn.
It took a lot of research to find the courses and make the progression that was right for me. I had to move colleges and had more transitions, which was very difficult for me. Some colleges would let you repeat a level and others would not. The careers advisers at college were unable to give me any advice. I do not think they would be trained to do this for autistic people with a learning disability. For example, one person did not know what a supported internship was. My mum had to insist that the case officer came to the annual review and they did, which is how I managed to do a supported internship.
When I completed my level 3 in horticulture in 2023, two years into the autism strategy, my aim was to do a level 2 apprenticeship in horticulture. However, because I had a level 2 vocational qualification in horticulture, I was not eligible to do an apprenticeship, as the rules say that, if you have already achieved at that level, I could only do a level 3 apprenticeship in horticulture, which is rare, and I was not ready to do that. I needed to overlearn at horticulture level 2 in a practical working environment. There was no flexibility in the system to meet my needs or which recognised the time I needed, even though I had an EHCP.
There needs to be a hybrid approach here. When you leave education, an EHCP should change to a work, health and care plan and support people like me into work to be able to get an apprenticeship in which you are up against mainstream people. I have a passion for horticulture. I know the basics, and I would be able to cope with the learning and practical experience of a level 2 apprenticeship. With an overlearning approach I would at least stand a chance against neurotypical people without learning difficulties.
People like me need a head start. The level playing field does not work. The system needs to flex to meet the needs of autistic people with learning disabilities.
Baroness Pitkeathley: Thank you very much for those very helpful reminders.
Q87 Lord Wigley: Can I also thank all three of our witnesses very much indeed for coming before us and for giving the story in such a lucid and impressive manner. When I have asked my question, I will start first with Anita and then go to Alice and then Tania, if that is acceptable. In your view, what are the main barriers to access to education for autistic children and young people? Following the end of the autism strategy for 2021 to 2026, what should the Government do to improve access to education for autistic children and young people?
Anita Harrington: The biggest barrier is the lack of diagnosis. Children and young people do not know they are autistic, even though it may be suspected, but the education provider does not know either.
Once diagnosed, as I have mentioned, there has been no support offered and an EHCP is not automatic if you have autism. My son did not have an EHCP, so he did not have the opportunity to have professional input into what might have helped him. You need to be given ideas on what is available, as it will be different for each child and young person, and they need to consider what might help them. Autism is not a one-size-fits-all diagnosis, despite some people thinking that.
My son feels he would have benefited from an autistic group or after-school club at his school, especially when he was first diagnosed. He was in a mainstream school, I should say. Being able to share ideas and offer support with others in the same situation as him would have been really helpful. He also mentioned that it would be preferable if that group was run by an autistic member of staff, so they could empathise with the children and young people. They could also offer real-life examples and advice, and reassure them that it is actually going to be okay.
Lord Wigley: Thank you very much indeed for that, Anita.
Alice Willans: The main barrier in my mind is not being placed in the right setting with unmet and/or unidentified need. This goes hand in hand with delay in diagnosis.
Special schools seem to be seen as the crisis point for children without a learning disability, and as being only for children with a learning disability, but I do not understand why. They offer specialist provision to identify groups of children with special educational needs, many specialising in autism, either working at or below age-related expectations—but fewer for children working at or above age-related expectations. This, I feel, is a problem, as being left in mainstream might not give the best chance for children to thrive academically, socially and emotionally, and for them to have a sense of belonging.
The waiting list to receive an autism diagnosis is long and it is even harder to receive an EHCP due to high demand, meaning autistic children are unable to access the right education setting because they do not have the documentation that is crucial to get in.
The autism strategy sets out to build more specialist provision, including units and special schools. This is good and I can see this happening in my own local authority, but it needs to continue after 2026. Post-16 provision is a concern and for many it is like falling off a cliff—it was for me. Leaving my special school at 16 led me to have a mental health crisis due to the impact of the transition. I could have had access to high-need specialist provision at the expense of continuing to make progress academically, but I chose to go to a mainstream college with a small foundation learning department.
Even going there, I felt a bit like a round peg in a square hole. I felt anxious, different and lonely. I felt I had lost all the independence I had at school—I was unable to access the learning that year, I missed my school terribly and it felt like a bereavement. I wish my school had a sixth form that could have pushed me academically.
More specialist sixth forms would make a huge difference, offering life skills, social skills and a range of level 1 vocational courses with links to local colleges. I think this co-location works well. It would be great to have well-trained careers advisers who know the local provision and are familiar with the qualification structure, enabling them to help students plan their next steps and ensure they continue to access education for as long as they want to, at a pace that works for them.
Lord Wigley: Thank you very much indeed, Alice, for that.
Tania Tirraoro: The main barriers to access to education for school-aged children are funding, teacher training and suitable provision, because although autism is only the third-largest category of children with SEND, after SLCN—that is speech, language and communication needs—and social, emotional and mental health needs, it is the largest category of children with EHCPs.
This may be because of the complexity of presentation of autistic children. Many—perhaps most—will have co-occurring conditions and comorbidities, for example, ADHD, speech and language difficulties, social skills, dyslexia, dyspraxia, hypermobility or Ehlers-Danlos syndrome, PoTS, anxiety, pathological demand avoidance, and often gender dysphoria as well. Children with Down’s syndrome can be autistic; children with foetal alcohol syndrome and foetal valproate syndrome are also usually diagnosed as autistic. So, it stands to reason that they will have a wide range of needs and need highly supportive and holistic specialist educational environments with small class sizes.
Many have very spiky profiles. For example, they might excel in maths but find writing or reading comprehension very difficult. They can have poor working memories and executive function, yet they may be able, like my daughter, to build their own computer at 14. They may have a massive amount of potential, but without the right support, that will be lost to the world. Again, this is happening with my daughter, who is now 25. Her comorbidities make having a job impossible. She is really smart, which is fantastic, but who would give her a job if she cannot work a full day? It is very variable when she can work because of her comorbidities—and she did get the right support at a fantastic specialist school.
The funding issue is acute. The school delegated SEN budget, which is for people without EHCPs, has not been increased since before my children were in infant school, which is 20 years ago—so it is worth much less now. Even so, that is not ring-fenced, so it can be used to fix toilets or buy pencils because of cuts to school budgets. How is the school supposed to buy the SEND resources it needs when that money does not even get to the SENCO?
Schools cannot easily get access to input from LA educational psychologists, speech and language therapists or occupational health therapists, because there are not enough to do that and to do the statutory assessment work that is needed for EHCP assessments. So, is it any surprise why parents and schools mainly apply for EHC needs assessments? That is the only way that children can get any kind of support they need.
Even with an EHCP, there may be more funding, but there may not be the funding to put what it says in there into practice—that is if it says anything useful at all, because you might just be in the wrong environment, as Alice found. This is why autistic specialist education, especially in secondary, where school becomes more difficult to navigate, is really needed.
Now, autism in girls is being increasingly noticed and diagnosed. Last year, we saw a 25% increase in the number of autistic girls on SEN support—that is without an EHCP—and a 20.7% increase in girls with EHCPs. I will talk about training provision in other answers.
Lord Wigley: Thank you very much indeed all three of you; that has given us a lot of food for thought.
Q88 Baroness Ritchie of Downpatrick: Thank you Lord Chair. You are all very welcome and I found the evidence so far quite fascinating and very informative, so I thank you for that. My question will first go to Anita, then to Alice, and then to Tania. The Government want mainstream schools to be made more inclusive, including through adapting classrooms and creating specialist facilities. In your view, how could mainstream schools and other educational settings be made more inclusive for autistic children and young people?
Anita Harrington: First, funding is absolutely key, and I echo what Tania has just been setting out. Schools are already struggling, so how are they going to manage to help autistic children and young people? I mentioned before that EHCPs are not automatic for autistic children and young people, so there is no funding set aside for an individual. Then it is not available for them to get the help that they actually need.
If there is funding, it allows things to be tried, tested and then implemented, and it gives opportunities. There are a variety of ways to access education, not just via schools, and this needs to be considered. Within the school environment, there need to be specialists in autism and also people with lived experience, and these need to be identified to children and young people who are autistic.
There needs to be training on how to support and help autistic young people and children, not just awareness of what autism is. For example, my son struggled in mainstream secondary school with people talking or misbehaving in class. He did not understand why the teacher’s authority was not respected. He became agitated and very stressed and ultimately was not able to learn in that environment and therefore his grades suffered as a result. He reported what he was feeling, but nothing changed. As a result of this, he did not feel very valued and from then on did not like to report anything because he did not see the point. That really needs to change.
Alice Willans: Mainstream schools and other education settings can be made more inclusive by not treating autistic children differently, but by having effective strategies that benefit all children. This includes making use of visuals for all children, more structure in the classroom, greater predictability, modifying classrooms to reduce sensory overload and providing easy access to support resources such as ear defenders.
Alongside this, there needs to be a culture of inclusion and appreciation of equity rather than equality: not the same support for everyone but different individual support to help everyone achieve the best outcomes. This could include having an autism base with trained staff for children to use that unstructured time with mentors; introducing autistic children to each other and running social skills groups that would include both neurotypical and neurodiverse children; and making sure that understanding of autism is part of the curriculum and revitalised year on year to progressively embed the understanding of what autism is and how to understand autistic peers.
Listening to the voices of autistic children and young people and their parents is a vital part of making the autistic learning environment inclusive. By sharing their experiences through professionals listening, simple changes can be made, but big changes like a change of provision can be considered too. This should happen at an annual review. Of course, not all autistic children and young people have an EHCP, but there should be a review of a support plan offered at least termly to all autistic learners.
Tania Tirraoro: First, we need better teacher training in SEND. Initial teacher training has never had the amount of SEND content it should, although I believe this is on the way for change.
There is in-school SEND training available, funded by the DfE, which is delivered by whole-school SEND, but this needs a greater take-up. The DfE needs to do a better job of telling schools it is there and that it is free and available.
One good thing I see is the use of continuous provision in reception. It is a much gentler start to school than used to happen. It is much more like preschool, for example. They use this at my grandson’s school. I think if his dad—my son—had had this kind of set-up, where the children were allowed to move around the rooms, with different areas where they can experience different things, instead of having to sit at a desk as soon as they get into school aged four and copy stuff down and do as the teacher tells them, then he would not have had a behaviour plan in reception as he did.
There are schools that are doing really good work, but the push for resource provision and units attached to mainstream schools is also driving it, which is the direction of travel that the new Labour Government seem to be going in. This could be good for some children if it is done well, but while the DfE is still looking at an evidence base to base this on, councils are already pushing ahead, and they are creating units and resource provision. If these are generic units for any child with SEND, for example, the danger is that then you could see a TA in charge instead of a specialist teacher. If the children in them are not in an integrated part of the mainstream school, then it is not inclusion at all; it is just segregation within a mainstream school.
Another thing that schools can do to be inclusive is to stop telling prospective parents that their school does not do SEND and that the one down the road might be better for them—that is how those schools get good results. Or they can stop excluding children because they have not bothered to do an assessment for SEND.
A large proportion of children arriving in alternative provision are found on assessment to have some kind of additional need, but it is easier for high-performing schools to get rid of them than to find out what the issues are and to support them in mainstream. That is not just for autistic children, but for any child with SEND—but it seems to be autistic children, particularly those who are not diagnosed, who seem to get the worst end of it.
Baroness Ritchie of Downpatrick: Thank you. That was a very useful set of answers, because it covered the need for better teacher training, more structure in the classroom and investment in resources.
Q89 Baroness Hodgson of Abinger: Good afternoon to you all and thank you so much; it has been so interesting so far. My question is first to Alice, then to Tania, then to Anita. The Government’s autism strategy for 2021-26 aimed to improve transitions to adulthood for autistic children and young people. In your view, what are the main barriers to autistic children and young people getting the support they need with transitions to adulthood?
Alice Willans: As I have said before, my transition post-16 to college was tough. It felt like a cliff edge. Over the last year, having reached 25, I had my last annual review and no longer have an EHCP, and the current barrier I face is trying to find a full-time job and being supported to do this.
Another barrier is lack of understanding of the support needed, when it is needed and when it can be found. Autistic young people leave education at different times and the guidance is unclear. Finding out what is there or what services can be accessed can be tricky. Autistic young people can pass through one service to the next, being told they do not qualify. On reaching 25, people no longer fit into a neat category. They can often do nothing but stay at home.
As a result of my supported internship, I have gained a gardening job one day a week, volunteering. It gave me a weekly schedule. The claim of supported internships is that by the end of the internship, people with autism and/or a learning disability have employment. However, it is not quite like that. I have worked two days a week—one working day I already had—but some of my friends who have similar needs to me have no work at all.
I do not have a solution to go forward and no particular support to do anything about this. I am in a grey area. I do not need support from high needs provisions such as post-19 provisions. I need a way into full-time work, so here I am at 25, wondering what I could access next. How can I transition to full-time employment? I am still supported by a local authority organisation, but the barrier is that they do not have the resources to be able to support the high number of people that need support from this team, and recruitment for them is challenging due to the minimum wage paid to staff. I continue to be lucky to have the support of my family, but I should not have to rely on personal circumstances.
Tania Tirraoro: Alice’s experience is quite similar in many ways to that of my own daughter. There really is not anything out there to support you to find the work that you can do, unless you have parents who are there and are switched on and willing to help you. Even then, what can they do? They cannot give you a job; somebody has to support you to do that.
Transitions in secondary are supposed to start at age 14, but while that may be true when it comes to updating an EHCP, young people are still often steered towards unchallenging courses rather than supported to achieve what they really can achieve.
I do not think FE actually has any dedicated SEN budget at all, so if you do not have an ECHP, they do not get any extra money to support you. If a young person can get to university, they can get a disabled student’s allowance, but a lot more needs to be done to help them survive, for example, being away from home. Too much relies on the student setting up support by themselves, which can be impossible. Especially for those with anxiety, the end result can be that you drop out before the end of the first year. We have also seen the lethal consequences of a lack of support.
If a young person has their EHCP removed at 16 or 18, as is increasingly the case, because local authorities are trying to save money, all the support they had falls away. This is something that Alice has also just alluded to. At her age, you lose the support, and what else is there? So many young people are NEET: not in education, employment or training. The system has failed to support them getting into a traineeship, an apprenticeship or a job.
Once in a job, getting access to work support is also hard. It is even harder to administer because—though I think this may have changed—up until recently you had to do it by writing in all the support hours and then posting it. I mean, what year are we in? So, the odds are stacked against young people—and people of any age—who are autistic or have ADHD, in getting support in getting to work.
Anita Harrington: I echo the point about being at university and being alone. My son is four and a half hours away at university, and there have been some difficulties. He has mental health issues as well as being autistic. The university can do their best, but they do not know him as well as the family, and that has been a struggle.
Going back to the question, my son identified that the main barrier is what is actually meant by transition: transition to adulthood in what way? Does that mean education? Does that mean university? Does it mean employment? Does it mean building life skills? That really needs to be defined.
As Tania and others have alluded to, there is really a cliff edge, in my opinion, going from childhood to adulthood. For example, my son had a lot of CAMHS support from an early age, but it just literally stopped at 18. Nothing has been put in its place because he is not bad enough to need adult services. To be fair, his CAMHS worker tried to prepare him for a life without CAMHS support, but ultimately it was up to me and his dad to pick up the pieces.
The school sixth form did a lot of meetings and workshops for both my son and for parents on what happens next and the options available. There was no mention at all of disability or DSA, let alone autism, and that is accepting that autism is not a disability, but it is often lumped in with it. All of the university preparation events were the same. There was no mention of special needs, autism or anything like that.
At the university open days, I had to proactively raise this with accommodation providers, lecturers, et cetera, for example, in trying to find which halls of residence would be the quietest. He does not like external stimulus so needed a quieter area, but the university had not considered that. They told me to go to a more expensive one which was likely to be quieter—but I am not sure that is really the case.
When he went through the disabled student allowance assessment, that was much better. They did consider what was available, and he was able to choose what he thought would help. We have seen in university that they are much more autistic aware than they were in schools.
Looking wider than university, I have seen some improvements in job applications and job interviews—for example, companies accepting videoed CVs or giving questions in advance for interviews, which really helps. Managing money can often be an issue, and my son is included in this. It is obviously an issue now he is at university and away from home.
As parents, we have done our best, but basically, he is on his own. It seems to have been left to charities to actually offer support. A local charity here in Bristol offers autistic young people support in managing money, but that is only if the young person recognises they actually need it. The universities offer general courses on managing money and finance and all sorts of other things, but that is actually not enough when you are autistic; it does not take the extra needs into account.
One thing I thought of, and I do not know if it is possible, is whether student finance perhaps needs to consider this so that the money is not given up front—or at least so that the option not to have the money up front is available to autistic students.
Baroness Hodgson of Abinger: Thank you very much—that was all very interesting. I hear your frustration through all this, from all of you.
Q90 Baroness Browning: Good afternoon and thank you so much for what you have shared with us already today. Following the end of the autism strategy from 2021 to 2026, what should the Government do to improve transitions to adulthood for autistic children and young people? I am going to begin with Tania, please, and then I will move to Anita and then Alice.
Tania Tirraoro: We are seeing ever-increasing numbers of young people and adults who are neurodivergent. The Government need to take note now and think ahead, because this is something that they have been historically bad with. They need to look at the future of the direction of travel of how young people are coming through the system and how things such as the pandemic have affected young people. That needs to get better.
Young people need to be supported to reach their potential. We are talking about getting rid of immigrants, but how are we supporting the young people we have to get work? We need to move away from what would be good in theory to what is practically good. We need to listen to the experts, for example—from researchers to the NDTi and its fantastic resources for moving into adulthood—as well as autism charities, and of course most of all to young people, in terms of what would work for them.
The whole range of people I mentioned earlier, with all those different needs, all need a different type of support that they can access if we want to help more young disabled people, as we obviously do, into work. There are some employers who do a brilliant job of supporting autistic young people inclusively and without stigma, for example—even GCHQ. There are disability confident employers like Legoland, for example. We need more of that kind of thing, and those people need to be more proactive as well.
We need practical management of support, not just strategies or theory. For example, we should not just say that we think LAs should do this. We should be asking: how are they going to do it and how are you going to fund them to do it? We should ask what has worked in other areas under this strategy, and what has worked well, so that we can put that into practice in other places.
We need social care as well, for example. I applied for social care for my daughter. They could not decide whether to go with the learning disabilities team—she is not learning disabled—the mental health team or the physical disabilities team, so she got bounced around all three, which took several years. Eventually, they came back and said, “Yes, you can have one, but we are going to charge you £60 a week”. This was said to a girl who lives on universal credit and PIP. Of course, the Government want to take PIP away from many people as well.
So, get your joined-up thinking together, Government. Do you want to support disabled young people into work or are you just going to punish them by taking away the support that they have? That is what we need: joined-up thinking, to stop government departments thinking in silos and to fund it properly. Otherwise, it will not happen.
Anita Harrington: Thank you. First, there needs to be a review of the current strategy, as I recognise that my or our experience may not be the norm—although listening to Tania and Alice, I think perhaps it is.
We need to identify what has actually worked and what has not worked, and why that is the case. We need to identify good practice that is happening in individual schools, colleges and universities and disseminate that to others so everyone can learn and perhaps adopt that good practice.
We need to clearly spell out what any new strategy is trying to achieve. What are its goals and objectives? Are they going to be targets year on year? How will they be measured? Who will measure them? How will funding work?
My son describes the heading of “help autistic children and young people” to be too broad. What does that mean? How will that work in practice? There needs to be more detail than there is in the current strategy, and there need to be set expectations for both children and young people, their parents and everyone else. There needs to be significant input from the autistic community into any new strategy. This committee is a great start, but there needs to be much wider engagement. Basically, the saying of “nothing about us without us” absolutely applies here.
Perhaps controversially, if possible, we need to reconsider the “autism” term, as one size does not fit all. My son, for example, prefers the “Asperger’s” definition because “autistic” to him is too broad. It does not identify with how he sees himself. His needs are different to other people and, when he was first diagnosed, he just could not see himself in any of the paperwork that was given to him—albeit there was very little given in the first place.
An analogy we came up with is based on someone having a broken bone. The treatment of one broken bone is very different to another. You would have very different needs if you broke your arm as opposed to your leg. Yet, if it looks like autism, everyone is trying to treat it as a one size fits all.
There needs to be an awareness programme to educate and engage the general public, particularly employers. The world is generally set up for neurotypical people, so it needs to explain that autism is not just one thing, and to point out some of the traits that we have—yes, I am autistic too—and how they can be beneficial to an employer. Nothing is ever going to improve if autism is seen as one thing. Perhaps it needs to be subdivided and explained that someone with Asperger’s is likely to need X, Y and Z help, whereas someone with ADHD perhaps needs something completely different.
We need to allow the autistic child or young person to customise what help is available to what they actually need. There are very different requirements in the autistic community. Some people are very high functioning, whereas others have very high support needs, and that needs to be identified.
To finish, non-autistic people are all different, with their own different needs, preferences, et cetera, just like autistic people. We are actually no different.
Baroness Browning: Thank you very much. I have two autistic adults at home, so I fully understand the Asperger’s definition that you gave.
Alice Willans: There needs to be better provision for autistic people to find employment. Supported internships and work experience programmes need to be used more effectively as ways into work. They need to sit within companies—for example, the RHS, the National Trust, hotel trades, Legoland, Transport for London, et cetera. I know of successful internships in a hostel, for example, run by Ambitious about Autism, where employees are trained to support autistic young people who are trained into specific job roles.
What needs to happen is that young people need to access supported work experience where they can learn the job over a period of time without being paid, to then be trained into a job. I know from my own experience that a more successful pathway into a job is by doing work experience or volunteering first, and then a workplace realising your skill and seeing you as a valued member of the team. Then, it can offer paid employment. This is successful up to a point, however, as it is not an advertised job in the first place. This has happened to me—you normally end up with one day a week of paid work because they do not have the budget to pay for more days.
However, it is better than nothing for me and more successful than going through the process of applying for a job and interviews. If you are autistic and/or have a learning disability, you can often not be shortlisted or find the interview process too overwhelming, even with adjustments—which has happened to me on all my attempts at applying for jobs so far.
Even among my friends and peers, all of them who have gone down the route of applying for jobs have applied for a number of jobs, such as working in a café, but have been unsuccessful without even getting to the interview stage. All five of them felt depressed about their situation and did not like being unemployed. Apprenticeship roles can be restricted too, creating barriers to specific workplace learning. There needs to be more flexibility around the apprenticeship roles, as I mentioned earlier. That enables autistic people to overlearn and successfully complete a course that trains them into a role and that has a greater chance of becoming a job.
Baroness Browning: Alice, thank you so much for that.
The Chair: I thank our three witnesses today so much for their experiences and stories but also their very thoughtful analysis of what the committee should be looking at, and, importantly, some fantastic ideas of the focus areas that we should be taking. So, Alice, Anita and Tania, I am very grateful to the three of you for taking the time today.
If there is anything that you think of that you suddenly wish you had said or want to write to the committee about, please do so. We would be delighted to hear from you if there is anything you feel still needs to be said. We would always be delighted to hear back from you. You will get a transcript from the committee clerk to check for accuracy, so if you could look at that, that would be fantastic.
On that note, I draw the discussion to a close. The committee meets again in public on Monday 19 May. In the meantime, this public meeting is concluded, and I draw today’s evidence session to a close.