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...
Mona79 said:I think it's a hard thing to accept because it's not seen as simply another way of being which it should be! Last night I was saying to my husband that we may all be human in this world but what does that mean?! We all think SO differently. I have OCD and I'm not the sum of THAT but say "autistic" and people jump to conclusions just as they do with OCD. I don't wash my hands all the time. We are NOT all alike! My son is more compassionate and sensitive than most people I know but he has ASD. They say you know one person with an ASD and you only know ONE. That's true too. Stereotypes due to film and literature can be very damaging. I do LOVE reading and listening to Tony Attwood however. He is full of compassion. My son is one of the most interesting and gentle people I know. He is quirky and full of joy as well as of frustration but I understand him perhaps due to my battle with OCD. I think some people just feel things very acutely. That could be seen as a handicap but also on good days a gift.
I think it's a hard thing to accept because it's not seen as simply another way of being which it should be! Last night I was saying to my husband that we may all be human in this world but what does that mean?! We all think SO differently. I have OCD and I'm not the sum of THAT but say "autistic" and people jump to conclusions just as they do with OCD. I don't wash my hands all the time. We are NOT all alike! My son is more compassionate and sensitive than most people I know but he has ASD. They say you know one person with an ASD and you only know ONE. That's true too. Stereotypes due to film and literature can be very damaging. I do LOVE reading and listening to Tony Attwood however. He is full of compassion.
My son is one of the most interesting and gentle people I know. He is quirky and full of joy as well as of frustration but I understand him perhaps due to my battle with OCD. I think some people just feel things very acutely. That could be seen as a handicap but also on good days a gift.
I agree. Mental health is another area where people hear one thing and think another. A lot of this is to do with the way the subjects are treated in the popular media.
People with Asperger's are stereotyped as 'lacking empathy'. I was told by people I know that I couldn't have Asperger's because I work in care. Yes... I do. But there's a difference between being able to care for someone and being able to put yourself in their shoes. I do have trouble with empathising. That doesn't stop me from being a human being, though. On the other hand, quite a few of the care workers I've worked with over the years often don't seem to really 'care' very much. I think it's in large part about being able to identify with minorities and the vulnerable.
Today at work, a few of us were talking about the film 'The Imitation Game', based on the life and work of Alan Turing. A few people spoke about his homosexuality. I mentioned that he was an Aspie, too.
'What's an Aspie?' asked one of my colleagues.
I replied 'It's shorthand for someone with Asperger's Syndrome'.
'Asperger's Syndrome? What's that?'
You have to bear in mind that we're all trained care workers for people with autism and special needs, and a couple of our clients have Asperger's. I couldn't believe that someone there hadn't even heard of it, or understood it.
It shouldn't really surprise me though , given the experiences I've already mentioned.