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Telling my son he's got AS

missmoo

Hi

 

I'm new to the forum but need some help from people who live with AS be it parent, carer or whatever. My son is 12 he has high-functioning ASD diagnoised when he was  nearly 6 yrs old. Since moving to a comprehensive school his anxiety levels are extremely high (anxiety has always been high but got worse in recent months). Over the last few months we have had more outside agencies involved because I couldn't cope with his more frequent outbursts. He is very very reluctant to change and is ruled by routine and obsessions but a fantastic child who is very intelligent. We have had a Barnardos worker visit the house the last 3 wks but he is questioning more and more bout why she is coming. She is trying to get a sessional playworker to help with his social skills as he has no friends and stays at home a lot.

 

I guess overall my question is how do I tell him? When I contacted the ASD Ed Psych the other day it's always read this book or that or get involved with a support group in my area but I work full time and work term time so time off on a frequent basis is difficult. I need advice from people who have done it so I don't get it wrong!

  • I had to tell DS when he was 9, one night when I went upstairs I found him in my bed crying, he wanted to know why he was different!  It was heartbreaking. 

    Because he was only 9, I did find some of the books useful, but also talked to him about how everyone is different.  It's really hard to know what to do, but I found since then DS is more aware of his own sensory issues and will say if he doesn't like something.  I was completely honest with DS and we had a chat about it, it also helped that there are other family members with ASD. 

  • Hi, if you have contact with a speech and language therapist they can be very helpful in chatting through  differences  positively  with work books such as the big A and establishing how much they know already. We began by talking abt everyone being different and how i.e. Some people need a hearing aid to help them and you find busy places and change make you worried and need a bit of help, we all do in different ways. Talking of your own differences and others can make it easier e.g. Asthma, epilepsy, allergies, arthritis, dyslexia, tall, short, bird phobia and so on, drip fed over a period of time. Watching a dvd can be helpful such as 'Adam'. Watch it yourself first to judge when it wld be the right time. If you can chat to the slt that is where i wld start. I used to say all the 'visitors' were there to try and help him with his anxiety and be happy again. Good luck.

  • Hello there, 

    I am sorry to hear that you and your son are facing some hard times. Your sotry reminds me a lot of my little brother. He is also high functioning and very intelligent. We have been through a lot to help him gain control of his outbursts. There isn't really one thing I can offer that will help you. Every child with Autism is different. It's really about finding what works for them specificly. My brother went through a phase where he was having more and more outbursts and it was because of school. The school we had him in was unfair and didn't give him the attention and support he needed. His teachers were always sending him to the principals office for having an outburst that was caused by other children irritating him and they never got into trouble. Eventually we looked into different schools and send him to one that had more experienced people that coudl deal with him outbursts. The main thing I can say is to just be patient. I know it must be frustrating, but try to be as calm as you can and not get upset or stressed out when he has an outburst because that can make him feel more anxious. Try to find something he can do to help him frustration. For example, we started telling my brother to start counting inside his head everytime he felt frustrated. It worked, but only for a little while. Now he does push ups when hes frustrated. It sounds silly, but it helps him relax and avoid an outburst. 

    As far as telling him goes, I can't say I have any advice. I don't really know if we ever had that conversation with my brother. He is a smart kid and he found out on his own that he was different from everyone else. Which has actually helped him because he tries a lot harder to do things he thinks are "normal." If you want to talk to your son about his Autism then I would suggest that your just completely honest with him. Don't try to make it sound better than it is. I've learned that people like my brother and your son are a lot smarter than us and can always tell when were lying or when we're sugar-coating things. 

    I hope this helps a little. Good luck and God Bless