Hi Everyone,
I have asked one of our parents to write a bit about her experiences of aspergers. She has a child with aspergers who is at our college and I really appreciate her being able to express what it is like. I quite often feel that we don’t know enough about this topic and so will try to bring more about it over the next term.
I’ve heard people refer to their lives with an autistic child as like living on a roller-coaster. I would have to disagree. If you ride the roller-coaster day after day, you would soon get to know each bend, drop or squeak of the track. No two days are ever the same in the world of autism. There is no way to predict what is going to happen as the slightest change in routine or misplacement of an important object can blow a whole months worth of therapy out the window.
Autistic parents become more familiar with the insides of numerous medical examining rooms than they do their own lounge rooms. We visit paediatricians, occupational therapists, psychologists, nutritionists, physiotherapists and enrol in a variety of courses to assist with making friends, dealing with anger and so on. Without these understanding people in ours lives, I’m sure we wouldn’t have the strength to continue.
Friendships are hard to maintain for parents of autistic children. You tend not to go out as certain noises, smells or lights can trigger over-stimulation or lead to a meltdown. On the occasion you decide to go out, and a meltdown occurs, you are subjected to comments like “all they need is a good smack” or “maybe you should rethink your parenting style”. It’s easy for people to point the blame at parents if they don’t know anything about autism.
I often ask people “if you saw a child in a wheelchair would you tell them to get out and walk up the stairs?” The response is always the same “of course not”. A child in a wheelchair or who has down syndrome can easily be identified as disabled, it’s a visual disability. Autism is a hidden disability, you can’t see autism.
I have been recently asked “if I could change my son’s autism would I?” My husband and I would have to answer no. Even though our lives can become hectic and we truly don’t understand our son and can’t get through to him, he is still our son and we love him immensely.
The biggest hurdle we face as a family is the fact our son doesn’t have any friends. This is the biggest concern for us. We can handle the disorganisation, the sensitivity to certain noises, wanting to only eat the same foods, keeping to himself or watching football matches over and over and over. It’s seeing your child wasting away, alone without anyone to play with and missing out on all the wonderful and yes naughty things children should be doing.
Cate says
Thanks for sharing Shane 🙂
kezzles says
Brilliant. Thank you so much for such an insightful and honest piece.
I have a son with a disability and our biggest ever fear (among the many, many) was that he wouldn’t have friends. I am happy to say that, fortunately, he does now and for that I will be forever grateful and thankful – I know how extremely important it is.
It wasn’t always that way though: after experiencing friendship difficulties at college, I spoke with his teacher who in her infinite wisdom decided to incorporate ‘role plays’ in her classroom that didn’t single out my son but gave all the kids a lesson in ‘walking in somebody else’s shoes’. It may not have made all the difference but it certainly helped. It’s the kids who need to be educated because it is the kids who will ultimately become your son’s friends.
I wish the very best for your family and your son, that he will find the happiness he deserves. And I hope we hear more on this subject.