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Dealing with family

Mona79

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...

  • HI,

     I would like to thank you for giving me this opportunity to introduce myself.

    My name is Berenice Carissa, I had completed my graduation from Oxford University. I had 5 years experience in technology. My life ambition is to become a successful woman in my organization. My hobbies are creating new ideas, new crafts from waste papers and water bottles.

    That's it about me

    Thank you.

    View more

  • Wow. Do you think you can introduce the concept to this person? That's alarming isn't it?

    People wth ASD are so hard on themselves. I know so many people WITHOUT ASD who totally lack empathy and those who HAVE ASD who are incredibly astute...it frustrates me! It must ruin their confidence being told that a key symptom is a lack of empathy. When my son was tested last month his psychologist said he had incredible empathy and then she went on to say that he had ASD. I felt confused but now I understand. He definitely IS ASD and it was the first time that I had proof that he was with the knowledge that he is also incredibly thoughtful. I told an acupuncturist I see for migraines about my son's ASD diagnosis and he said that if he had empathy he wasn't ASD. I felt angry but then I realized that some people just don't know and I have to let it go...the anger disappeared. So many people WILL understand and if it ever hits this man's sphere he will too. It's a lack of exposure...he works miracles on my migraines but he is not a specialist of ASD. I accepted that and that his skills weren't in the ASD field. Each to their own thank goodness but I hope your colleague will look into Aspergers evenso....!

  • 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 love criterion at the clinic and Lazar sounds incredible.

    Thank you so much for your time and for your advice for books. I particularly like the sound of the second. I will order it. I was fascinated by the excerpts you included. Thank you.

    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!

    Perhaps your brother DID read your information...I hope you feel relieved in yourself. I realize (late!) that change has to come alone to people. We can do nothing about it from the outside but protect ourselves. Good luck and thank you for your help.

  • Thank you for the link Martian Tom. That is so thoughtless the biscuit business. It would have hurt nobody to give her one and it would have changed everything for her. You understand...thank you. I am so sorry that you are having to deal with the thoughtless people. You sound so kind. I told my son that there are only differences. I think people can not understand what it is to be non-neurotypical unless it truly enters their sphere. I feel so sorry for the girl at work that you described. It seems to me cruel. I would prefer to believe that it was ignorance because then at least there is hope!

    It is just sad as there is such beauty in the non-neurotypical. Compassion is everything.