World Autism Awareness Week

Mike Weir Excerpts

Thursday 28th April 2016 Commons Chamber

[Mike Weir (Angus) (SNP)]

I, too, congratulate the right hon. Member for Chesham and Amersham (Mrs Gillan) on securing this debate. Like the hon. Members for Berwick-upon-Tweed (Mrs Trevelyan), for Birmingham, Yardley (Jess Phillips) and for Stalybridge and Hyde (Jonathan Reynolds), I want to add the perspective of a parent of a child with autism.

My younger daughter, now in her 20s, is autistic, with associated learning and communication difficulties. I, too, went to the launch of the booklet, “Too Much Information”; it is excellent and I recognise much of what appears in it. There are two telling statistics on page 2: 87% of families living with autism say that people stare at their child’s autistic behaviour; and 74% say people tut and make disapproving noises. Over the years, I have experienced both of these. Like many parents, I developed a very thick skin. I know one parent who said that the worst thing for her was that people who she knew and spoke to regularly would ignore her when they met her and she was accompanied by her autistic son. How hurtful can that be?

One of my constituents, Karen, contacted me ahead of this debate and asked me to say something about her experience. This is what she said:

“I have two children with autism who find going out overwhelming. I have one that will try and hide while the other will shout, become aggressive or laugh hysterically. We are stared at by the public and comments are made regarding my ability to parent or that my children are spoiled. My eldest is becoming aware of these comments and this causes her psychological distress.”

Many parents will recognise that.

As parents we find different strategies to deal with our children’s behaviour. It is often the unexpected that hits us. Our daughter was, and still is, fascinated by Disney cartoons. When she was younger, her favourite was “Cinderella”, especially the mice that were Cinderella’s friends, Jaq, Gus and Suzy. She has soft toys from the Disney store, and she carries them everywhere. We took her on holiday to Disneyland Paris. On the first day there, Cinderella was out and about, and we took her to meet her and her friends—but, of course, the mice she met were not the small characters she expected. They were bigger than her, and she simply could not cope with that—it was not what she expected. Like other families, we spent the rest of the holidays checking where the characters would be on each day—but they to go and meet them, us to discover ways and routes to avoid meeting them.

We face a similar problem every year with summer fairs, coffee mornings and similar events, now that so many have face painting for children. Our daughter simply cannot comprehend what is happening when children have their faces painted to look like a tiger, a cat or some other animal, and she will freak out if she sees it. We have to carefully avoid taking her to such events.

My daughter still loves her cartoons, particularly “Thomas the Tank Engine”, which she watches on video so she can pause, rewind and watch repeatedly small sections that appeal to her. Frankly, after 20 years of this, I could cheerfully strangle the Fat Controller, but I also live in fear of the day when the video machine finally gives up the ghost, because such machines are not so easy to get hold of these days.

In many ways we are lucky: we live in a small town and most people know us; our daughter is well known in the local shops and particularly in the charity shops throughout Angus where she hunts for videos. She is accepted, and no one really bats an eyelid at her sometimes seemingly odd behaviour. In common with many autistic people, my daughter needs the comfort of routine. When we go shopping, we go round the shops in a specific order. It may not be a logical order to anyone else, but that is the order in which it must be done. If it is not, there will be trouble.

If we are going to do something different from our usual routine, we need to lay the groundwork well in advance, explain what we are doing, when we are doing it and why, and let our daughter think through it and mull it over for some time, discussing the implications with her. Sometimes we can manage to do that.

I am conscious of the fact that this may all sound a little depressing, but as with any child, there are joys as well as challenges. One of the things my daughter’s school did was to take her to Riding for the Disabled—and she took to it like a duck to water. Neither I nor my wife had any background with horses, but our daughter was captivated and formed a real bond with the horse. It is quite incredible and joyful to see her on a horse, concentrating on what she is doing and on the direction of the instructor as she guides a horse around the course, making it trot and being very much in charge. I remember going up to the stable on one occasion to find her being given a frightening-looking instrument to hoick stones out of the hooves of a horse. My daughter was cheerfully doing that—something I would never have attempted.

I was a practising solicitor at the time, and my wife—rather ironically, perhaps—had been a teacher of children with special educational needs, yet we had difficulty in negotiating the system and securing education that was suitable for our daughter. We first had to obtain a record of needs, which, at that time, was a passport to the provision of the educational resources required. It sounds easy, but we faced the apparent reluctance of professionals to give a clear diagnosis of what was wrong with our daughter. That is an experience that many other Members have described. The education department involved said that a child should not be labelled; the cynic in me wonders whether that was because once a record of needs had been granted, the facilities would have to be put in place and costs incurred.

After that, we needed to find a suitable school. We looked at many before we found one that we felt understood the difficulties and offered a way forward. It was not within our local authority area, although it was close to our home, and we had to negotiate around that to ensure that funding was available. A deal was done, which required us to arrange transport to the school ourselves. That school made a great difference to our daughter. It was a small school attended by other children with special needs, and it had an excellent speech therapist. Our daughter flourished, and, as I said earlier, it was there that she got into horse-riding.

Are things better today? Yes, I think they are. Are they perfect? No, of course they are not: there is a huge amount still to be done. As some of my hon. Friends have pointed out, the Scottish Government have a strategy for autism, which is a real attempt to bring services together and ensure that autistic people are given the assistance that they need. That does not apply only in the public sector, but I should mention that in Arbroath we now have a fantastic community dentist. We had great difficulty in persuading anyone to look at our daughter’s teeth, although not because it was thought that she might bite them if they tried! The community dentist, however, had been trained in providing dental care for autistic people. Our daughter was introduced to the dentist’s surgery gradually: she was taken into the waiting room first, and was taken gradually onwards. The dentist managed to look at her teeth, and they were fine, which is just as well.

As I have said, however, the Scottish Government’s strategy does not involve just the public sector. A few years ago Aberdeen airport introduced a similar scheme, allowing autistic people to visit the airport and become used to it before their first flight. Cinemas and theatres are now putting on special shows for autistic people: the sound is lowered and the lighting increased to make the experience easier. However, difficulties remain, and many other Members have spoken of them.

In my experience, the transition from education to life after education is very difficult. In many instances, there are not many facilities for autistic people. It can be very difficult, especially in rural areas, to find somewhere to move on to after school, and the future is uncertain when it comes to such matters as housing. At our age, our thoughts begin to turn to what will happen when we are gone. What housing and other help are available to people like my daughter, who will never be able to lead an independent life? All authorities must consider that growing problem.

If there is one thing that I would ask of those who are watching the debate, or who will read the report of it, I would ask them to get hold of the National Autistic Society’s excellent booklet. The next time they see a child being loud or inappropriate, or a parent having difficulty controlling a child, they should not assume that it is a case of bad parenting or bad behaviour, as my constituent Karen said. Something else may be going on, and it could well be autism.