World Autism Awareness Week

Melanie Onn Excerpts

Thursday 28th April 2016 Commons Chamber

[Jess Phillips (Birmingham, Yardley) (Lab)]

I speak as a mother currently on the long waiting list for diagnosis. I thank everybody for their comments today.

I am delighted to speak in this debate. Like everybody else, I commend the right hon. Member for Chesham and Amersham (Mrs Gillan), who is a tireless campaigner on this issue—a subject incredibly close to my heart. So many misconceptions about autistic people get thrown around, such as “Everyone is somewhere on the spectrum”, which I am sure we hear a lot in this place, or my favourite, which is that people with people with autism have some sort of superpower or special gift. I can tell everyone now that they do not.

Last Friday, I watched the newly released DVD of “Star Wars: the Force Awakens” with my sons and their lovely autistic friend. Between us we decided that what appeared as the teenage tantrums of the new Dark Lord, Kylo Ren, was perhaps just him needing a bit of a “time out”. We concluded that perhaps he was autistic and just could not fit into the world he found himself in. Perhaps the new Death Star was just too noisy and made him feel stressed out. We thought he might wear the mask because he did not like eye contact. I am not sure that this was the film-maker’s intention, but it softened us to him. The group of people I was with “get” autism and ASD—they live with it every day—so they can see how a person’s behaviour might alter if things start to kick off. To all of us, it is not the person with autism who has the problem—it is the rest of the world. We have to think differently about people who think differently.

On every street I visit in Yardley, I meet families struggling with autism in adulthood or in their children. My postbag is full of heart-breaking cases of how much autistic people are struggling. In my constituency there is an amazing autism support group called Spectrum, where every meeting is packed with parents who want a break. This is not a minority issue—it is a growing issue, and we are not keeping pace with our provision, our awareness or our attitudes.

Today I want to focus on how the world needs to think differently about employment for people with autism. Only 15% of working-age people with autism are currently in work, according to the National Autistic Society. For any parent with a child with autism, this presents a heart-breaking and bleak future—but it does not need to be. Ambitious about Autism has identified that in fact 99% of young people with autism want to work.

So what can we do? The Department for Work and Pensions has made some impressive commitments over the past few years in saying that Jobcentre Plus will implement autism awareness and autism networks. I welcome all this, but in reality it is not what people in my constituency are experiencing. One constituent told me: “I do not blame the staff, but it comes down to a lack of understanding of autism. The support the jobcentre claim to be providing is not there. I was treated as though I had no disability and left to my own devices. That is the problem of having an invisible disability.”

[Melanie Onn (Great Grimsby) (Lab)]

At a meeting last week, somebody raised the issue of jobcentres specifically regarding the personal independence payment and self-assessment of people with autism or Asperger’s as being incredibly difficult. Why does that continue to be part of the process?

[Jess Phillips]

I could not agree more. Another of my constituents told me just this week how the jobcentre had failed to recognise the need for his mother to be able to attend meetings about his PIP arrangements and to change his benefits. That has resulted in frequent incidents of faltering benefits, which has made him incredibly vulnerable and left him with totally insecure finances.

On another occasion I heard of a mother who wanted to access a bus pass from the local authority for a home-to-school scheme, in order to get her son travel-ready for when he leaves school in a few years’ time so that he will be able to go on the bus on his own. She was given a “computer says no” answer and told to come back in the few years when it would actually matter. However, because she is a mum with an autistic child, she knows it is going to take time and training.

We have got to be bold and flexible. We have got to think differently about how we make our services and the world’s jobs available to people on the autistic spectrum. Although things are not perfect, we have come a long way from the days when a person in a wheelchair could not have a job because they could not access the building. Autistic people may not face a physical barrier like a staircase, but the barrier effect is exactly the same.

Not providing fair and equal access to these people is not only wrong; it is also illegal, and we have got to make sure that employers know that. We need employers to understand how an interview might feel to somebody with autism. It is terrifying enough for somebody who is neuro-typical, so I ask Members to imagine for a second that they do not want to look someone in the eye, find talking in front of strangers impossible, or find it impossible if two people speak over each other.

Ambitious about Autism has just launched its “Employ Autism” campaign to transform the employability of young people with autism. I ask everyone in this place to do as I have done and offer to provide work experience to young people with autism. I imagine that I will learn as much as my placement, possibly more. I also encourage Members to ask our local business improvement districts, chambers, local enterprise partnerships and businesses to offer tailored work placements and apprenticeships. That will help us all to think differently.

I want to stand here and say with confidence to every young person with autism and every parent with a child on the autistic spectrum: you can do anything. I want to say: your future is bright. I want to say it to myself, for my son. I want to say it to my son’s “Star Wars” fan friend. But I can’t. I don’t know what the future will be like for them. So let’s try to change it. Let’s think differently.

--- Later in debate ---

[Melanie Onn (Great Grimsby) (Lab)]

I join in the congratulations to the right hon. Member for Chesham and Amersham (Mrs Gillan) on securing the debate and on all her work on this issue. Last week, I was invited to Grimsby autism forum, which was held at Open Door. It is a fantastic group that helps to give people with autism and their families a voice in the many different systems that they find themselves thrust into.

I would like to raise some of the issues that were shared with me at the forum. There seem to be two main areas of concern: problems with diagnosing autism and Asperger’s, and a lack of post-diagnosis support and subsequent pathways. From speaking to the parents, I got the impression that diagnosis was seen as something of a golden ticket to the support and help that they are desperate for, but they really have to work for it. It sounds as though there is a hurdle every step of the way.

There is the fundamental problem, at least in Grimsby, that no one knows who is responsible for diagnosis. There is no clear division of responsibility between the clinical commissioning group and the child and adolescent mental health services. The issue is particularly acute for 16 to 18-year-olds. As a support worker put it to me, “If you are 16 to 18, you can forget about being diagnosed”. I would be grateful to the Minister if he clarified which body has the legal responsibility for diagnosis for people between those ages, and if he explained why they are not currently being diagnosed.

Many parents feel that schools, the local authority and the clinical commissioning group are reluctant to statement children, which prevents them from accessing the additional services they need. Does the Minister believe that there may be an issue in that councils and schools are not as proactive as they could be in diagnosing children? Some people have complained about assessments being done out of area. If long journeys are likely to exacerbate the worst symptoms of the condition, some people simply will not take their children, who will therefore miss out on the help they so desperately need.

Autism and Asperger’s on their own can be difficult conditions for people and their carers to cope with, but as was said by the hon. Member for Congleton (Fiona Bruce), who is no longer in her place, comorbidity is very common and can make diagnosis even less likely. It is a real frustration for carers when people receive help for ADHD or anxiety depression, for example, before they even receive a diagnosis for what they feel is the core problem. Obviously, help for co-existing conditions is welcome and necessary, but when it supersedes autism or Asperger’s support, it is simply seen as messing around at the edges.

Whether or not children have been successfully diagnosed with autism or Asperger’s, they are still held back in their education and find it difficult to break into the jobs market. Too often autistic children are put in the naughty box at school. NASUWT research shows that most teachers do not feel they have had adequate training to teach children with autism, which is worrying given that 70% of autistic children are educated in mainstream schools. I believe that children with autism can absolutely succeed at school, but if teachers are not properly equipped to help them, they are too often simply written off. I find it shocking that, as the hon. Member for Dudley South (Mike Wood) mentioned, the majority of school exclusions are for children with special educational needs, yet they account for only 15% of all students. How can that be compatible with section 85 of the Equality Act 2010, which specifically prohibits discrimination against a pupil

“by excluding the pupil from the school”?

On leaving school, young people with Asperger’s and autism often struggle to maintain long-term employment, or even to get a job in the first place. Navigo, a charity in Grimsby, runs shops and garden centres that provide opportunities for work and training for people with mental health conditions. It is a really valuable scheme, and as my hon. Friend the Member for Birmingham, Yardley (Jess Phillips) mentioned, I would like more employers from outside the charity sector to do the same. I am sure there is plenty that the Government could do to promote employment for people with mental health conditions in the public sector, as well as to incentivise private sector firms to do so.

Of course, some employers already do a lot to encourage disabled people to apply for jobs with them—for instance, by including the “Positive about Disabled People” symbol in their job adverts. Although disabled people are advised to look for that symbol in adverts, I do not understand why jobcentres do not hold lists of employers in the local area that are so certified. Surely that would be a relatively simple and helpful step for jobseekers with autism and Asperger’s. I hope the Minister will join me in calling on my local jobcentre to collect such information and start sharing it with autistic jobseekers.

Overall, there needs to be a better understanding of autism and Asperger’s across society, diagnosis needs to be much more common and the process for parents who are seeking a diagnosis needs to be made much easier.