Autism – Hidden But Always There

Judith Haire has very generously given us permission to repost a fascinating guest blog  about autism by Neiley68.  Neiley68 tells us about his son’s autism and the effects of autism upon the rest of the family. If you have any questions or messages of support please do feel free to ask them in the comments box below. Please also let us know how similar Neiley68’s experiences are to your own!

The original blog can be found at http://judithhaire.vpweb.co.uk/blog/2011/12/09/Guest-Post-by-Neiley68-Autism-Hidden-But-Always-There.aspx
Physical disabilities are a clear and obvious sign that something isn’t right with a person. It needn’t take a doctor to give a diagnosis to make that clear. Even assessors for Atos would see that a DLA claimant with a clear physical disability isn’t fit for work

But what about autism? It doesn’t always manifest itself in physical form, but its there. It’s a lifelong condition, so there’s no cure. It will be with the “victim” always. It can make life hard and a challenge, but it’s not the end of life as we know it. We first noticed things weren’t quite right with Matthew when he was about 18 months old. He would sit in his high chair and flap his arms uncontrollably, and was “miles away”. After a few weeks, I said to Matthew’s mum that I’d never seen any other children do that. We decided to take him to our GP, setting us on a path that would change his – and our – lives for good. The diagnosis process was long and stressful. Matthew had several sessions with the Community Health team and the doctor there. It involved several interviews for Matthew, which he found hard. Ultimately, they saw enough to warrant referring him to a weeklong assessment at the Raeden Centre in Aberdeen. There Matthew met Dr Strachan, a clinical psychologist at ARI in Aberdeen who would take Matthew on to her caseload. Over the whole process, she was marvellous. So supportive and helpful, ultimately diagnosing Matthew with an ASD in February 2009.
As I say, it’s not obvious that an autistic child has anything wrong with them, and without an official diagnosis from an expert, you have nothing to support any assertion that your child is disabled. We encountered that view in Matthew’s first session at nursery. His nursery teacher – who had special needs training – had Matthew sized up as a problem child. It was all down to bad parenting too. We would have to pick Matthew up 15 minutes early each day, excluding him from the quiet read time at the end of the session to prevent him from disrupting the class. We were asked to take him to the library and collect him from there, rather than him go with his classmates. The teacher took Jane to task for refusing. She made it clear they didn’t want a problem child to walk to and from the library.All that changed when Matthew went into his second year at nursery with much more understanding teachers and us getting the diagnosis. To be fair, the nursery nurses were fantastic. So understanding and patient. It was their patience that got Matthew on track for primary one. Sadly, one of his P1 teachers was less understanding. It was a hard year for us. Matthew took a big dive and was in a dark place for a few months following disruption to his routine after bad weather closed the school on and off. It was clear his teachers couldn’t cope with Matthew at this point. They had had a pleasant, quiet boy for 4 months, and now he was difficult to deal with – for us too, and we were learning to cope with an autistic child. Jane was reduced to tears regularly by the teacher on the step of the school in front of Matthew and other parents. We were regularly asked to “sort out” Matthew and his attitude. At one point Jane was told, “I can’t teach him when he’s like this.” His other teacher – much more able to adapt to Matthew’s behaviour – admitted to us she was completely unprepared for the change in Matthew. Things had come to a head with the school, resulting in us meeting with the head teacher and her depute over the teacher’s conduct towards Matthew. Both were clearly shocked at her behaviour. One of the changes they made was a “smiley chart” that visualised how Matthew had been during the day to save us from speaking to the teachers. It was a dreadful situation. They had demonstrated a clear lack of understanding of how an autistic child can be, and had no strategies for coping with Matthew. We know how he can be, had done our research and were developing coping strategies. It was like the diagnosis had been for nothing, and it was back to Matthew being a badly behaved boy with parents not up to the job. Nothing could be further from truth. Matthew has been loved from day one. We were doing everything we could to cope with Matthew, while giving time to his younger brother. Suddenly we were getting no help from the school. We were at a point where if he had the same teacher for P2, we were going to move him to another school. Ignorance of autism is commonplace – we were only just starting to see what that ignorance could do.
His poor brother Daniel has also had to suffer from Matthew’s autism. He may well be “normal” but suffers as much as Matthew. Matthew’s autism leads to uncontrollable urges – without warning he may throw objects across the room, run off, and worst of all for Daniel, hit him without warning. Daniel can’t understand why Matthew does this. He doesn’t understand why Matthew won’t play with him. That’s the lack of understanding of a child though. But Daniel is persistent – he and Matthew have built up a close bond, and Matthew already relies on Daniel. Daniel hasn’t learned prejudice and has learned to cope with and accept Matthew for who he is. Fortunately now, Matthew is more settled, although in many ways he hasn’t changed at all. He has two understanding teachers and is getting the support he needs. But with autism, the hidden disability, we know things might just change at any time.