I have just finished reading a book called 'a friend like Henry' By Nuala Gardner. Its a book about a mothers journey with children with autism, main focus is on her son with severe autism and how a pet dog broke into her sons world and he began to learn to communicate.
I found the book an emotional read and it reminded me of the harrowing tantrums of the earlier days and the difficulties we had faced. I could relate to the frustrations of other peoples comments, and the sadness how she had to fight for her sons diagnosis (as autism was not highly recognised back then). This lady had to overcome many obstacles in her life but it gave me hope as i read through the book how her persistent effort really paid off and her son was able to mix well with society and had many great accomplishments. Years later, when she finally was able to conceive again, her daughter was also diagnosed with autism but at the completely different end of the spectrum - which is where my son is. She was amazed at how much had changed in terms of acceptance and diagnosing but its still a long waiting game. This quote from the book, stood out for me:
'When we were facing the most challenging aspects of Dales behaviour all those years ago, I'm sure i we'd have jumped at the chance of dealing with a child at the opposite end of the autistic spectrum disorder, but Amys superior ability with language didn't necessarily make our lives any easier. Because she was able to manipulate the situation or obsession and interrogate us about it..... this made handling Amy even harder. With Dale once he was'programed' he adhered to family and school rules, which made dealing with him alot easier in the long run. As far as Amy was concerned, you had to jump out of a cake to motivate her to do something and then let her eat it - or at least have a consistent reward system in place to reinforce the message. We have therefore learned that it doesn't really matter what level of autism you are dealing with; it is how an individuals particular autistic traits impact on their life that is important'
I always remember thinking that my son wasn't that bad and thankfully he could verbally communicate so it was ok, it could be a lot worse. Thats not really the case, we have many challenges because of his ability to be so verbal. I remember someone telling me 'that its a bit like cancer in the sense that it doesn't matter whether its breast cancer or brain cancer at the end of the day its all cancer. The same with autism - it doesn't matter which end of the spectrum its still autism'. We have difficulties to face that other children do not, we have to adapt our approaches and have had to change our goal posts, in terms of what we expect. It's hard when others meet him that have a set idea of what an autistic child should be like and then they dismiss it as he doesn't meet 'thier' criteria, but for that moment in time he may look like he's the same as any other child but actually you have no idea of the preparation and work we have had to go through in order to get him to that place. There can be discrimination between whats expected between a verbal and non verbal asd child. Just because they have words does not mean they communicate in the same way as everyone else and will have the same traits as a non verbal. These traits can't be ignored just because they speak.
My son does have friends etc and we do meet up with other people but this is really hard work for him. It is not natural for him to process the hidden meanings and facial aspects of communication. It is not easy for him to meet new people or be in new surroundings. He has to process all this information. He does not have the social imagination to cope with different set ups of familiar surroundings. He can find the sensory element of a new place overwhelming. He has to work really hard at all of this and which is why he finds change really difficult. He does become tired quickly and we find that short bursts of successful communication is better for all of us. By short bursts I mean a morning or afternoon activity followed by rest and some time out.
Although the book was emotional to read I'm glad i did, it gave me a broader perspective of life on the spectrum and the end of the book was a summary of the experiences through Dales eyes. Now a grown man he was able to verbalise why he did some of things he had done. He was also able to communicate how grateful he was to his supportive network. I do sometimes feel scared of what the future holds for us and for our son, whether a 'normal' life will be possible, so reading Dales perspective was very encouraging and showed how far he had come. It is amazing to read what he had overcome and how it was achieved.