The loneliness of the person with autism...

I added this post (below) to my Facebook account - not because I wanted to garner sympathy but because I had read an article by a woman who was thrilled that her son had been invited to a birthday party and the mother holding the party was prepared to go the extra mile to accomodate her son's friend's needs and not leave him out. 
Did he need to go to the party earlier in the day when it would be less busy? Would he be happier in a quiet area? Basically the mother wanted to know how she could make sure that the little boy with autism who was prone to meltdowns could go to her son's party.
This got me thinking and I wrote the following...

"Tristram will be celebrating his 17th birthday on the 24th July - he has only ever had one birthday party in his life - when he was 4 and I could ask parents to attend with their children to help if Tris had a meltdown. 
Thankfully it was a success and he showed that he loved singing to an audience in the 'talent' contest! Teletubbies theme tune was the most popular choice but Tristram sang "Boys Don't Cry" by the Cure!

He hasn't been able to have a party since and has never been asked to one except for one swimming party a couple of years ago where we actually learnt that he could swim - very very well. Like a dolphin, in fact! (He doesn't tell us very much about his day - when asked he would tell us the contents of his school dinner!) When he was younger his behaviour was unpredictable and because of his communication difficulties he didn't make friends. Even being in special classes, an autism unit and then a more able mixed group he has shared space with people he knew, shared activites that were supervised - but he has never been able to make friends. Schools helped a bit by sometimes giving him an early birthday party in class because his birthday fell during the summer holidays. When we lived on the Isle of Lewis his teacher took him to the local Co-Op to choose a 'cow' cake and have a birthday celebration before he came back to the East side of Scotland. He remembers that party to this day.

 

It is possible to do something nice for somebody on the autistic spectrum with severe communication difficulties but it relies on a lot of effort and understanding of people who are born with these problems.

Tristram's birthday will consist of yet another day out with mum and dad, a meal out in town (which he has asked for), a takeaway when we get home with a film of his choice, a birthday cake (that he will choose because that has become the default position) and presents that we pretend are surprises but in reality he has given us a list of things he wants and we have done our best to fulfil that list. (No. He is not a spoiled brat. His requests are moderate and disarmingly sweet)
I will 'send' him cards from family and friends he hopes he will get cards from (but doesn't) because I cannot bear to see the look of disappointment on his face when he doesn't receive anything. And I will slip a fiver or tenner into some of them because he has learned that this is what happens when you do get a card.

His dad and I will do this every year well into his adulthood because his maturity level hasn't changed for some time now. He doesn't really look that different until you try to talk or interact with him then you realise he is, at best, a 10 year old in an adult body (younger in some instances)."

As a parent of 4 boys, the eldest 35, who have all left home, I was used to a houseful of their friends - boys and girls. I reasoned, as a fairly relaxed and easy-going mum that I would rather they did what they were going to do under the safety of our roof rather than hang about the streets. I wasn't a walkover, of course. I sometimes had to pull rank and make it clear they WERE under my roof.
Tristram will have experienced some of his older brother's friends coming and stopping over when he was much smaller. He sometimes mentions names of people he remembers. But he doesn't really have any friends of his own.

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