World Autism Awareness Week

Jess Phillips Excerpts

Thursday 28th April 2016 Commons Chamber

[John Woodcock (Barrow and Furness) (Lab/Co-op)]

I will try to reduce my speech to below five minutes to give others a chance to speak in this excellent debate, Madam Deputy Speaker.

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

Thank you.

[John Woodcock]

You are welcome.

We have heard erudite contributions in the debate so far, and I just wish to make two main points. The first is on understanding the scale of the problem. People have talked at length about this, giving some excellent examples, but I want to go further on the fact that we are still far from seeing the true scale of the autism problem in our country. This is partly because although recognition is growing, it remains insufficient among members of the community. It is also because of the number of worrying ways in which the true extent of the lack of capacity in local services is being hidden, and I hope the Minister will take up that point; the extent to which people are being denied is also being masked. The hon. Member for Glasgow East (Natalie McGarry) talked about the long referral times, way beyond the recommended limits. In Cumbria, the time taken is even longer than the average, which shows the problems.

I wish to relate some of the concerns that parents of autistic children consistently raise in their local support group, and when talking with charities and directly to me. They suggest that even the acknowledged level of deficiency of the service does not reflect the true picture. They tell of their repeated frustration at contact just being ignored and how difficult it can be to get service practitioners even to pick up the phone. That is not properly documented. If people cannot even get on the waiting list to be seen, or they cannot get their request to be acknowledged because their contact is not being acknowledged, the problem is even bigger than is stated. Particularly worryingly, parents have a strong sense that people will tell them orally that the service is not sufficient for them but will refuse to put it in writing in a way that could allow them then to escalate it through the system. I would like the Minister to reflect on that and say whether he believes that that is a genuine problem and whether it is a wider problem.

My second point is about my pride in what my constituency has been able to contribute to the wider awareness debate. First, I should mention “The A Word”, which many hon. Members doubtless watch, as it is filmed in Broughton-in-Furness, in the north of my constituency. As Members will see from the programme, it is a fabulous place to go. I commend all involved in that programme for doing important work in a mainstream, prime-time BBC programme that is getting the message out in a really effective way.

I have delayed my congratulations to the right hon. Member for Chesham and Amersham (Mrs Gillan), but I thank her for the way in which she has engaged with my constituent Deborah Brownson, who has produced an excellent book. It is a children’s guide to autism called “He’s Not Naughty”, which she is trying to get into every school she can. I want to thank the Mayor of Barrow, who has financially facilitated, just yesterday, getting it to all the schools in the borough. Ministers on the Front Bench are asking for personal copies, and I would be delighted to help in doing that. I ask anybody listening to this debate who can contribute to her financial drive to get this illustrated book to other schools to do so—all we need is the postage and some of the printing costs covered. It is an excellent illustrated guide that will explain to children just what is going on in the minds of autistic—[Interruption.] I am afraid that I have completely failed in my task and I am on my last five seconds.

--- Later in debate ---

[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.