Published on 12, July, 2020
Hello all,
I'm new here. I've never been on any forum so god knows if this'll work!!
I have a seven year old who has just been diagnosed as having ASD. We live in France but information is not as available there as it is in the UK and I don't ave any parents yet in my situation with whom I can chat.
I am visiting my family in the UK and my son has had a couple of outbursts in front of them. It's the first time they've seen him since he was diagnosed and bizarrely his differences are more obvious than they were before.Perhaps it's his age..now things just ARE more obvious.
He has just seen two of his cousins of 3 years old and of 15 months. I have been teaching him to ask for help immediately when he feels he will not be able to control his hands and feet but twice he has not and has pushed the children over. This has been so humiliating and sad for all those involved, him of course included. He will say "I didn't do it on purpose" which I believe because I know he was simply trying to remove an annoyance but with a lack of thought. Still, obviously we had to tell him off which we did. My sister then said "Will he learn from his punishment"? then later: "Do you think that's his autism"? I asked her if she had read any of my mails for the last month! I feel frustrated that people are not able to understand that he won't learn from a punishment in the way his brother would (who is "neurotypical"), that we will always be referees to a certain extent, that we need their help and that we aso need patience, understanding and time. I feel very sad as I know he is being judged and I feel there's not a huge amount of compassion for us as parents. I had to remind my Dad that standing watching my son fight with a baby and drinking tea was not at all constructive, nor was relating it to my sister when I'd solved the issue and all was finally okay.
I don't really know what I'm trying to say. I feel mortified even though it's not my fault, I feel really sad for my son and sorry for my sweet nephew that got pushed...
I feel that however I explain what we are all tackling that the disability factor is not at all understood and that everything that is wonderful about my son is missed. I always apologize for his behaviour but I'd love someone to once ask me what it is like living with him, what it's like for HIM, what they can do to help...etc. I've always looked out for other children, nephews, friends' children... I hoped that they would look out for mine too but I feel quite isolated. I overheard my Dad telling my sister with great drama what my son had done to her baby and I felt furious because he is incapable of seeing beyond the symptoms. Is that what people tend to do? How do you get over the disappointment of that, the sadness for your son...? I thought that in asking them to intervene if I was not in the room would be enough for them to realize the extent of our difficulties but they don't seem to have taken it on board and I then feel very annoyed if my son is struggling and nobody comes to his aid when he ASKS! You then end up with two casualties, the child who has borne the brunt of the frustration and the child who looked for help from an adult that didn't come to his aid.
Thank you for ANY help, any insight... It's all VERY new...
I have an acquaintance whose teenage daughter is awaiting diagnosis. She has lots of problems at school - making and losing friends very quickly, class disruption, etc. Then, at home, there are frequent 'meltdowns' as she calls them. She is much more understanding than her partner, who thinks the behaviour is 'wrong' and needs to be punished in the same way that parents might punish an ordinary child: grounding, denial of treats, etc.
Compassion is everything, as you say - and that comes with understanding (or, at least, trying to). I was diagnosed late in life - last year, aged 56. This is after a lifetime of increasing alienation from my family because of my behaviour. Even now, with the diagnosis, some of them still don't 'get' it. They can't persuade themselves to suspend judgment and look at things in the way they might with someone with, say, Parkinson's or Alzheimer's. In the analogy I like to use, I'm a cat in a roomful of dogs. I'm trying hard to behave like a dog to be like them, even though I'm a cat. They don't see me in that way, though. They see me as a failed dog. I sent my brother my full diagnosis to read. He's never mentioned it once.
A book that you might find interesting (maybe some members of your family might learn something from it) is Susan Senator's 'Making Peace with Autism'. There are some cheap copies available on Amazon (40p upwards).
www.amazon.co.uk/.../ref=sr_1_1
Also, Steve Silberman's 'Neurotribes: The Legacy of Autism and How To Think Smarter About People Who Think Differently' is excellent.
www.amazon.co.uk/.../ref=pd_sim_14_1
Chapter 2, 'The Boy Who Loves Green Straws', tells the story of an American couple who tried to 'cure' their son's autism before coming to realise that they were ignoring who he really was, and his uniqueness. And Chapter 3, 'What Sister Viktorine Knew', looks at the work of early 'humane' practitioners in the field, including Hans Asperger. He began his work at the Children's Clinic in Vienna, which was founded in 1911 by Erwin Lazar. Instead of seeing the children in his care as flawed, broken, sick or disabled, Lazar believed they were suffering from neglect by a culture that had failed to provide them with teaching methods suited to their individual styles of learning. He had a knack for spotting signs of potential in every boy or girl, no matter how 'difficult' they were alleged to be.
Silberman describes one of the children, Gottfried K, a nine-year-old boy who cried at the smallest change in his routine, was terrified of other children, was socially unaware and socially awkward, took people’s words literally and was teased by his peers mercilessly. He was ‘obsessed’ with rules, laws and schedules. When given an IQ test, asking him to say what a ‘ladder’ and ‘staircase’ had in common, he ‘failed’ by pointing out the differences that to him were far more important. Asperger saw more than 200 children with Gottfried’s profile. Some rocked back and forth or repeated the same phrases over and over. Some lined up their toys in strict patterns and would throw a tantrum if these were disturbed.
The criterion at the clinic for classifying behaviour as 'normal' or 'abnormal' was the challenges that it created for the individual child, not whether it strayed from some idealised template of psychological health.
Enlightened thinking! We've come a long way since then. There's still a long way to go, though...