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:Your aquaintance's husband may be in denial about the possible diagnosis. Only later do you realize that your child is not transforming, that she or he is exactly the same as before and that things can only improve as a result of a diagnosis. Until you realize that it doesn't take away your child it seems a little daunting. My husband denied the fact that our son had a problem right until the day of the diagnosis then he changed radically his way of dealing with problems, discipline etc overnight. He is so adaptable and our son's behaviour is already improving now we have the key. Perhaps this person will do the same and if not in time...people surprise you in their reactions. I was far more shocked than my husband was and I've known my child functions differently from birth! You never know how you will react. I was just frightened it'd take away what I found to be beautiful and turn it into a symptom then over time I realized that those things still ARE just HIM and beautiful symptom or not!
Your aquaintance's husband may be in denial about the possible diagnosis. Only later do you realize that your child is not transforming, that she or he is exactly the same as before and that things can only improve as a result of a diagnosis. Until you realize that it doesn't take away your child it seems a little daunting. My husband denied the fact that our son had a problem right until the day of the diagnosis then he changed radically his way of dealing with problems, discipline etc overnight. He is so adaptable and our son's behaviour is already improving now we have the key. Perhaps this person will do the same and if not in time...people surprise you in their reactions. I was far more shocked than my husband was and I've known my child functions differently from birth! You never know how you will react. I was just frightened it'd take away what I found to be beautiful and turn it into a symptom then over time I realized that those things still ARE just HIM and beautiful symptom or not!
Yes, that book is extremely worthwhile. From what you say, I think you'll find that second chapter very interesting. It was, actually, the Susan Senator book that played a big part in changing that couples' approach to their son. The 'cures' - medication regimes, chelation therapy, exclusion diets, mineral supplements, etc - were costing them thousands... and simply making their son more and more unhappy. A behavioural therapist who was working with him at the time, though, was achieving excellent results. It clearly must be a very hard thing for many parents to accept - especially when many still talk about autism as a disability - instead of a 'different ability'. I've always struggled with many things that most people take for granted: social relations, communication, etc. But there are other things I'm good at - including some things I'm probably better at than most. It's swings and roundabouts, as they say!