Headshot photo of Tim Nicholls next to purple quote

Last week, the All Party Parliamentary Group on Autism (APPGA) held the final evidence session of its inquiry into the Autism Act. The National Autistic Society is supporting the APPGA to run this important inquiry into the support and services that autistic people in England get. This final evidence session focused on support for children and young people, especially those who are moving into adulthood (often called “transition”). Tim Nicholls, Head of Policy and Public Affairs at the National Autistic Society, was on the panel asking questions and shares his reflections on the session and what he heard in this blog.

 

There is a “poverty of expectation and aspiration” for autistic children and young people. That’s the message I heard loud and clear from witnesses at the sixth and final evidence session of the APPGA’s Autism Act Inquiry. Autistic children aren’t encouraged to think about what their ambitions are and the support isn’t there to help them reach their goals. Too often, they’re written off.

Huw Merriman MP was chairing this session. You might remember that he also chaired the APPGA’s inquiry on autism and education back in 2017 – so it was good to welcome him back. As a result of that inquiry, the Government committed to extend the national autism strategy in England to include children too. This was a fantastic win – but now we need to turn our attention to what should go in that new extended Government strategy, which will be published later this year. We got lots of ideas from the last inquiry, so this time we really wanted get more ideas about the transition to adulthood because families and young autistic people tell us it can be like “falling off a cliff” in terms of the support they receive.

A couple of weekends ago, I joined our National Autistic Society Young Ambassadors in a focus group on the same subject. This group of young autistic people told us that school and social care services didn’t really help them prepare for being an adult and living independently. They also told us that moving from school, to college, to uni were all completely different and big changes to adjust to. But too often, the support they got was “one size fits all” and didn’t really take their individual needs into account. This was all reiterated by our witness at the evidence session.

Alison Worsely from Ambitious About Autism completed our panel at the evidence session. We wanted to know what is working and what isn’t, and the impact this has on autistic children and their families. Tamsin Green has an autistic son who needs a lot of support. She spoke powerfully about how services lacked ambition for him because of his complex needs. She was having to fight for help with toilet training and developing life skills to get him ready for adulthood. She said there is an “assumption that he won’t get any independence,” which is absolutely wrong.

Rachel Babbidge, from our charity’s Transition Support Service, highlighted that children’s needs that aren’t met when they are younger become very clear during transition and that means they might need much more intensive support later on in their lives. Meanwhile, Jacqui Shepherd – a parent of an autistic young person and a lecturer – pointed out how being shut out from support services means that people’s worlds shrink and they become isolated.

One of our witnesses, Liz Maudslay, gave a college perspective. Many of the duties that apply to schools when children are younger don’t apply to colleges and further education. There is less specific funding for support and a “huge discrepancy” between the quality of support in different colleges.

Dame Christine Lenehan, who was a key witness in our previous inquiry, joined us again. She set out a fundamental question for the inquiry and for Government: “Do we know what good transition commissioning looks like?”

The overwhelming answer from the evidence we heard was that the SEND system does not know what good support looks like for autistic children approaching adulthood.

It doesn’t start planning early enough. It doesn’t understand the wide range of needs that children across the autism spectrum might have. And it certainly doesn’t commission the services to meet those needs.

The new extended government autism strategy is a really important opportunity for the Government to give local commissioners the answer to this question. Last week’s inquiry session, alongside our survey and call for evidence, has given us a huge amount of information so that we can tell the Government what they should put in the strategy.

We’ve now finished all our inquiry evidence sessions. Our next step is to put together all the evidence we’ve heard and work with all the MPs who have chaired sessions to draft a report which we will launch in the autumn. You can keep track of our progress here.

Thank you to everyone who has taken part so far: from our chairs, panellists and witnesses; to every person who responded to our survey or has sent us extra evidence.