World Autism Awareness Week

Anne-Marie Trevelyan Excerpts

Thursday 28th April 2016 Commons Chamber

[Mrs Anne-Marie Trevelyan (Berwick-upon-Tweed) (Con)]

I congratulate my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) on securing the debate and on her tireless work over many years to raise awareness of autism and to start to change Government priorities around those in our country who are not neuro-typical beasts.

My hon. Friend the Member for Bury St Edmunds (Jo Churchill) and the hon. Member for Argyll and Bute (Brendan O'Hara) have described movingly some of the experiences of families and those who suffer from autism. As my right hon. Friend’s Autism Act 2009 was going through the House, I was battling to find support and a diagnosis for my eldest young son. It was evident to me that my very bright and articulate son was not like other boys of his age. He had an extraordinary level of concentration and extremely good reading skills and could converse at length with adults in a most unusual way, but he was also very anxious, fearful of noise and bright lights and unable to cope with anything unexpected in his day—the slightest change to the time we left the house, and all hell broke loose.

Once my son started his schooling, at the age of three, his young life and day-to-day experience became increasingly more challenging, and school life, which demands conformity, became something he was entirely unable to cope with. We struggled on for several years, because no one seemed to have any ideas; teachers said nothing except, occasionally, “Well, come and pick him up early if it gets too much”, “Is it all right if I call if he’s getting difficult in class?” or “Will it be all right if I don’t feed him with everyone else because it seems to be a problem in the canteen?”. I was just a mum with a little boy who seemed to have so many talents but could not cope with daily life.

Eventually, my GP, a wonderful man, referred us to a child psychologist in Newcastle, whose failure to correctly diagnose my son as autistic was nothing short of shocking. Not only did he fail to see what was becoming obvious to our family and our friends, who were trying to support us, but he tried to medicate my son with Ritalin, claiming that he suffered from attention deficit hyperactivity disorder—two behavioural traits entirely absent from my son’s behaviour. The doctor had failed to speak with my son’s teachers, having claimed that he had, before making his diagnosis, and it was only because I fought back against the medical profession’s failure that my son was not inappropriately drugged.

Thanks to huge financial support from my family, we eventually found a team of paediatric doctors based at Great Ormond Street hospital in London, 350 miles from our home in Northumberland, who quickly diagnosed my boy as an Asperger’s syndrome sufferer. We received support, understanding and guidance from these wonderful specialists who empowered us, James’s parents, to challenge school rules and regulations in order to get the changes to his learning environment so that he could once again enjoy and thrive in it. We have encountered two or three teachers for whom medals would be inadequate to recognise how they have put themselves out and learned themselves what it means to be an autistic little boy so that they can help other children coming through the system afterwards. As I say, medals will never be enough for them.

Without good friends, good luck and financial support, I know that our son would have fallen out of school by the time he was six or seven. The pressures that normal life put on our autistic children should not be underestimated. No right-thinking person would ask a child with a broken leg to run up the stairs, but the invisibility of autism means that these children are asked to do things that, given their hypersensitivities or gaps in neurological connectivity, simply ask too much of them.

[Pauline Latham]

My hon. Friend’s son was extremely lucky because he had a mum who was prepared to fight and had the ability to fight. There are many parents like her who will fight for their children, as most parents want to do. However, some parents do not have the ability or the confidence to do that, and these are the ones that are really being let down by the system.

[Mrs Trevelyan]

I absolutely agree with my hon. Friend. This is part of the reason I am here. I decided that advocacy was needed for those who are unable to access the system, who do not know how to fight back or who are too honest and quiet folk trying to get on with their day, muddling through it with difficult jobs and complex family environments. For such people it is too hard to fight what still today seems to be an implacable system in so many parts of our country.

The legislation of my right hon. Friend the Member for Chesham and Amersham—the Autism Act 2009—has begun to change attitudes towards autism, and I am now 10 years on from the battles I had to fight. The general population is becoming aware, slowly, of this invisible disability. The challenge is its invisibility—until it becomes visible through a crisis.

Many of our greatest artists and scientists have been on the spectrum—men and women who see the world differently from those of us who are “neuro-typical”, as my son always refers to me—mostly as an insult, I suspect, but I take it as it is! As a nation, we should value those who offer an understanding of our world that we neuro-typical folk simply do not have. They are vital to our growth as a nation, both culturally and economically.

The genius of the great Alan Turing brought us the computer—possibly the greatest leap since the steam engine—yet he was shunned and misunderstood throughout his life. We can read about his school years, which were truly awful. The damage that society inflicted on him through a lack of understanding and a blatant disregard for his difference in character highlights what we must reverse, 70 years on, to ensure that no child on the autistic spectrum is lost to us or our nation.

Small changes to the school environment and support for families that are bringing up autistic children with day-to-day tasks, which can reduce their stresses, can lead to positive and thriving outcomes for these wonderful members of our communities. Most importantly, we need a team of paediatric experts across every part of our country who can diagnose autistic children early on, and we need councils and schools that are trained and flexible in supporting these children to fulfilling lives.

I recently met a family in my constituency with three boys, two of whom have been diagnosed. I also have in Alan Carrick, at Northumberland County Council, a passionate advocate for all our special needs children, and he is particularly interested in supporting those on the autistic spectrum. It is difficult for him to meet the needs of each and every autistic child because there is not enough flexibility for him to provide preventive and creative solutions for individual families, which would provide practical support.

If we can reduce the day-to-day pressures on parents through low-cost early interventions, we will increase the chances of these families staying together. There are obvious long-term, value-for-money arguments for investing in these families early on to stop long-term costs to the state of family breakdown if we fail these children and their families at the early stage. I call on our Government to encourage our councils to be creative and forward thinking in their support for our autistic children—most urgently of all by getting speedy diagnosis so that support can hopefully follow.

--- Later in debate ---

[Mr Robin Walker (Worcester) (Con)]

It is a pleasure to follow the right hon. Member for North Norfolk (Norman Lamb), who made the point about the need for earlier diagnosis more powerfully than I possibly could; it is certainly one that I support in today’s motion. I also want to join in the many congratulations to my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) and all those from both sides of the House who were involved in securing the Autism Act 2009. It was the beginning of a journey that continues with today’s debate.

I echo the concerns that were powerfully raised by the hon. Member for Argyll and Bute (Brendan O’Hara) and my hon. Friend the Member for Bury St Edmunds (Jo Churchill) about the risks of social isolation for people with autism, and I want to pay tribute to a couple of organisations in my constituency that have made great strides in reducing that isolation. The inspirational Monday Night Club was founded by Laura Gill, a constituent of mine with learning difficulties, and provides a forum for people with all sorts of learning difficulties, including a large number of people with autism, to come together, to socialise and to feel normal in a social setting.

Another organisation is ASPIE, the charity that I mentioned earlier, which was set up by Sarah Micklewright, an inspirational constituent who was on the autism spectrum. Tragically, and illustrating the point that my right hon. Friend the Member for Chesham and Amersham made about the lower life expectancy of people on the spectrum, she died two years ago next week aged only 38, but she has left a remarkable legacy in Worcester. A house was bought by her parents for people on the spectrum to come together, socialise and share ideas. I have been privileged to visit on several occasions and have been teased for my neurotypical behaviour and for my inaccurate birthday cake-cutting, among other things. It is a fantastic organisation that has played a part in not only helping to reduce the risk of social isolation, but inspiring people to come together and believe in themselves and in their capacity to work and to create businesses for people on the spectrum.

Many hon. Members have made powerful points about the talents of people on the spectrum and the need to unleash them, and we heard about the evidence in the article in The Economist. I pay tribute to the founders of an organisation called Wits End Wizardry, a web design company that was launched out of ASPIE in Worcester and entirely staffed by people on the autism spectrum. It discovered that the software programming skills of people on the spectrum are incredibly powerful and that with the right guidance and support and with the right people working with them to provide front-end customer service, they can deliver fantastic websites for all types of businesses and charities. I believe that it has done some important work for various organisations, including Ambitious about Autism, which shows the contribution that people on the spectrum can make.

[Mrs Trevelyan]

Does my hon. Friend agree that we need to use these great talents—this concentration and extraordinary ability to see the world in different ways? In the north-east, a business called Autism Works is taking on mathematical PhD autistic young men—they are all men—to challenge the big boys in the provision of that scientific and tech support. I think this is the future for our country.

[Mr Walker]

My hon. Friend is absolutely right about that, and I pay tribute to her for her fantastic speech earlier. She is on to something here; we are seeing this happening in the north-east and in the midlands, as our increasing cyber-security cluster is looking to take on more people with autism. We heard earlier about the incredible contribution of Bletchley Park, and many of the people who contributed to that work were probably on the spectrum. In cyber-security, businesses such as Titania in Worcester are actively going out to recruit people with autism. I want to see more businesses making that effort and creating opportunities for people. As Ambitious about Autism has shown, we need to do things differently. People cannot just be invited in for interview, because the whole process of interview is set up to work with neurotypical people. We need to create an autism-friendly job application process in order to make sure we are making the most of the talents of these people. I pay tribute to the businesses that are making the effort to do that.

I recently held a Disability Confident jobs fair in Worcester and I was very impressed to see Malvern Instruments, another major employer in our area, recruiting. One of the people representing it in its recruitment was somebody whom I had previously met at ASPIE and who is on the autism spectrum. I wish to pay tribute to Justin McKeon who will be running the Worcester 10k to raise funds for ASPIE, and if anyone in the Chamber wants to join me in supporting him after this debate, I would be delighted.

The Government have many programmes to help people to work. We are talking about halving the disability employment gap, and autism is a big area we should be hitting on to try to make sure that that happens. We also have the apprenticeships programme, many aspects of which can be tailored to support people with autism. I have spoken to my hon. Friend the Minister for Skills about this, and I know he answered a question about this during Education questions this week. I am delighted to hear that he is engaging in round-table meetings with the autism charities and organisations to make sure that we can tailor programmes within the apprenticeships programme to suit more people on the spectrum. There is much more work to be done on this and I would like this “A” badge I am wearing, with the “A” standing for apprenticeships, also to stand for ambition, aspiration and achievement for people with autism.