You can read more about our life with autism here http://www.wasthisintheplan.co.uk/p/aspergers.html
Theo, my eldest son is 19. He was diagnosed in his early teens, as many quirky, intelligent, high functioning boys with autism tend to be. Puberty was like kryptonite to his hormones, the meltdowns, the stress, the anxiety tested the whole family. School refusal, failing academic performance, arguments and challenging behaviour followed. Life for all of was tough. Although we were caring for the increasing medical needs of Daisy and our younger children, Theo's needs took up a huge amount of our time and energy .
Family outings were a nightmare, family meals were battle grounds, we trod on eggshells and muddled our way through trying to get help and support for Theo.
This came from several sources; we paid for a private assessment which confirmed Theo's autism diagnosis, a new SENco joined his school who just "got" him, a family support work at our local CAMHS service refused to give up on him and bent the rules to keep him on their books, we persuaded the doctors to give him medication to help with his sleep and his anxiety.
Looking back now I wonder how we or he survived; it's bad enough dealing with a neurotypical teenager hitting puberty, a teenager with high functioning autism is in a different league. At the time I could not even raise my head above the parapet to look into the future, I just needed to get Theo through this time in one piece.
Yet, look where we are now, if someone could have given me a glimpse into the future to see the young man that boy has become, it would have really helped me get through some of those darker days when I really despaired for his mental health.
Theo is 19, he's about to enter his final year of 6th form studies. It will have taken him four years. He started off studying for A levels, and walked out after the first term claiming he had more knowledge on IT than his Computer Studies teacher (which is probably true), he started an apprenticeship which initially worked very well, until Andy was diagnosed with cancer and the lack of support for Theo's learning needs on the qualifications element of the apprenticeship became evident (as a sidenote, if your child has high functioning autism and they are thinking of following an apprenticeship, be aware, be involved and consider how the employer and provider will communicate with you as they have no legal requirement to communicate with parents once your child is over 18 unless you put in place something like a power of attorney - with your child's permission of course).
Fortunately, it was third time lucky as Theo started on a Btec course at a local Further Education College last September, his statement of Special Needs has been moved over to an Education and Health Care Plan which will stay with him until he is 25, he gets great support and he is getting the all important paper qualification which proves that he is the IT genius we all know he is.
The apprenticeship and the stresses of working in a fast paced office environment day in day out served to confirm to Theo that at the moment that sort of life was not for him, so to raise extra money he turned his hobby of helping out local friends with their computer problems into a business. He now has his own very successful IT support company called Just Call Theo.
He met his lovely girlfriend four years ago when she was in the audience of the regional public speaking awards in which he gave a moving speech about his diagnosis and how, without people like him, we would be deprived of so many of the high tech solutions on which society now relies.
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| Theo & his girlfriend, Ria. They have been together 4 years now. |
If I could have been given a window into the future during those tough times, it would have kept me going. To know that with time, with good support, things could work out for Theo, it would have helped me get through those really low days where I really could not envision what the future would hold for my stressed, troubled eldest son.
It's not perfect, high functioning autism is a lifelong neurodevelopmental disorder, Theo can still become stressed and anxious, he can say inappropriate things, he still doesn't like change or unpredictability. But the difference now is that with maturity, good support and yes, his medication, he has learned to read the scripts so that he can feel more in control. He can see when a behaviour or response is not appropriate, even if he can't understand why and he can also reflect on how he could have done things differently when things sometimes go pear shaped.
When Andy was dying I phoned the boys' psychiatrist to ask for advice on how they would handle death. She told me that out of my four children, my boys would probably handle it the best as for them it was rational, black and white. Andy was alive, now he's dead. This doesn't mean they don't desparately miss their dad, they both talk about him every single day. But they are not in denial or living with some false hope they will see him again (both my boys are atheists so as far as they are concerned Andy's energy has been transferred on so of course he is still around us, as atoms of carbon).
Theo stepped up to the mark incredibly when Andy died, he's been my absolute rock, buying me chocolate when he can see I have had a bad day. He may not have the words but his deeds say so much more. For those who think that people with autism don't have empathy, then Ria, his girlfriend would disagree, Theo has supported her through some tough times too and now as she also builds her own online business (http://mathemateacal.tumblr.com/)
When Theo was born Andy and I had dreams and plans for him, some of those wont happen because Theo is not us, he is himself, an individual. So while I would have loved for him to go to University just as I did at his age, rational Theo just can't see the point of getting himself "into huge debt to get a degree in something I can do anyway".
We both felt it was important for our children to travel and see the world just as we had done, however.
It took some planning on my part, and a leap of faith too, but last Saturday I took Theo to Heathrow airport to catch a flight to the States. He's away for nearly 3 weeks, he's just spent a week with some close friends in Pennsylvania and tomorrow he flies to Austin, Texas before then flying to New York and then home. He has had to contend with jetlag, interacting with strangers, trying food that he's never tried before, a Pennsylvania heatwave, changing timezones, a different bed - he's doing brilliantly. I am so proud that when my friends post on facebook about their teenagers going off for the summer travelling, I can say that my eldest son is also off on a big adventure of his own (obviously being able to facetime daily makes things a lot easier too!).
I was contacted a while ago by some good friends who have just received a diagnosis of high functioning autism for their son and this post is for them and for anyone else struggling with their differently wired child, wondering what life will hold in store. It may not be the life you planned for them, it will be different, hang on in there though, your child will help you grow as a person as you learn to stand in their shoes and understand what the world feels like for them. Having boys with autism has taught me empathy and patience , I know so much more about a whole range of subjects thanks to them and I am so proud to be their mum.
Our family doesn't do the norm, but what is normal anyway? Theo is finding his feet, no doubt there will still be some bumps on the road ahead but I am so proud of the young man he has grown up to be, he was so worth the fight!
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