19/09/2016 13:24 BST | Updated 20/09/2017 06:12 BST

Autism, Valentino And Schools

Melanie Sykes

When you are the parent of a child with autism you have a choice to make about schooling: whether to send your son or daughter to a special school or to a mainstream one. Special schools, where your child will be around only children with special needs, will have more knowledge; mainstream schools have kids that can relate "normally" and good habits hopefully to be copied.

Making the right choice was a dilemma my ex-husband and I faced six months ago. We were asked to go in for a meeting at the mainstream school our twelve-year-old son Tino, who has autism, went to. The head teacher told us the school wasn't right for Tino, who had been there for three-quarters of his first year at secondary school, and that we should think about finding another one. It was upsetting and stressful but we had to move forward and start the search all over again. One of his lovely teachers said to me, "You know Tino copes really well but do you really want him just be merely coping when he could actually be enjoying his school days?" Well you really cannot argue with that - but I just wish they had told us earlier.

And so we looked at other schools, both special and mainstream. Our gut was telling us that he should be in mainstream (but with support - our local authority funds a full-time TA who is his one-to-one support throughout the day) so he could learn from other children. Tino really does straddle both worlds - he didn't seem autistic enough for the special schools and yet he seemed too autistic for the mainstream ones. He is a clever boy with great use of language and many but also niche interests which are ever evolving and he has an amazing memory. We just needed to find a school that would help him apply his skills to his learning and what was the best way of doing that. There are few schools that have a provision for autistic children but the quality of the ones we saw was varied: some were for me seemed a little behind and some felt like an after thought attached to the school.

It seems to me that schools are struggling to look after our children with autism. And they are struggling for a number of reasons. I am contacted on social media from people who tell me schools are failing to understand autism enough to properly support their children. Also people report that schools are taking the extra funding they get from the local authority and using it elsewhere, for purposes other than supporting the child with autism.

We saw this first-hand at Tino's school, shortly after they told us to look elsewhere. On the way out of a meeting where I had just been reassured that he's never left alone without his one-on-one teacher, I saw Tino alone in the playground without any support. He was running up and down the playground in and amongst all the larger boys and girls. He was completely vulnerable and showing obviously very different behaviour to the others with no adult eyes on him. I led Tino back to his classroom, kept it together until I left the school then cried. It was shocking and devastating and from that moment I could not wait to get him out of there.

Clearly the problems can start because your child doesn't tell you what goes on at school and you don't always get to catch up what is going on. A friend of mine with an autistic son, who has also recently discovered that her son's TA is used elsewhere in the school when he's meant to be with her son, says:

"There is lack of transparency in schools - they are getting away with this because the children they are taking the support away from can't say that it is happening. So, problems only get discovered by chance. There is also a great lack of knowledge. Everyone needs proper training on autism to understand the issues. To understand why play time is so difficult.

The search for an appropriate school was soul destroying - we were even told by one school not to even bother applying as they were so oversubscribed. Many tense months passed. Tino had a few 'trial' days, which is necessary but obviously stressful. The one thing that I always do is keep Tino in the loop as to what is happening but he is always protected from our despair and anxiety and we never told him why he wasn't accepted at certain schools so as not to knock his confidence which is fragile at best. We just told him the school was not right for him which is equally as true.

We kept going and and finally we got a break from a school that we saw and liked. A school that, at last, had a place for Tino. He has been there only a few weeks and all is going well so far. We are extremely lucky also that his teacher has a son the same age as him on the spectrum, so she understands autism and Tino's needs from a grassroots level.

It is a fallacy to suggest all children on the spectrum are geniuses - the reality is most will struggle, both socially and academically. But I think the single mindedness of thoughts that can be typical of an autistic person can be a great attribute especially when you find what it is your child is truly interested in. These children have a lot to offer and have great character. Tino's absolute truth at all times even though sometimes it may seem inappropriate has lit up my life. He reminds me daily to always be authentic and be true to myself.

I think the system as is stands at the moment is failing these wonderful children who have so much to offer in this world and with the increase of diagnosis are not going anywhere and it will be a great loss to society if they are overlooked.