Son has probable asd

mummyroysof3

was expecting it but not to be told today tbh

Not sure why i posted really but have posted on here back when he first was refered to gp and got some advice which was great.

daska

Excuse the probably silly question but what is 'probable ASD'? Surely a proper diagnosis is a yay or nay? (Though I understand sometimes they have to treat other conditions so that they subside and the ASD traits manifest fully.)

Edited to add that DS2's referral is just about to go to the ASD pre-assessment panel so it's a legitimate question as I'm genuinely confused.

Corelli

Hi, my son (13) has been diagnosed with Aspergers Syndrome in the last year.

Will your son have more diagnostic investigations to clarify the 'probably' prt of what you have quoted?

Whatever, you should be getting help so you can help him. This is a good place to start your own investigations. http://www.autism.org.uk/

They have local support groups throughout the country and loads of information on the website.

It's pretty horrible coming to terms with the fact that your child won't be the child you were expecting but I do think that many people with Asperger's have strengths that come with the syndrome but the growing up bit seems very very hard. A book I have just started enjoying is http://www.amazon.com/Freaks-Geeks-Asperger-Syndrome-Adolescence/dp/1843100983 by a boy of 13 with ASD, lots of good stuff for a parent to take on board.

Wishing you and your family all the very best

mummyroysof3

i think the probable bit is due to waiting for some genetic test results but she thinks its highly likely and that having that in the paperwork will give strength to or support workers efforts to get him1 to1 support in place for september when he starts nursery.

Corelli

Genetic test results? Blood/DNA testing of relatives? Is that to look for other things? AFAIK there is no physical marker for anything on the spectrum. We got asked .... massive questionaire and interview .... lots of questions and we were also asked about relatives with similar behaviour but I'm not sure that was part of the diagnostic procedure. our boy was in hospital at the time and we saw so many professionals and answered so many questions.

haggisneepsandtatties

My son was diagnosed with Aspergers Syndrome when he has 5 - he is now a big, hairy 15 year old! Whilst it took a while to get my head round the diagnosis, my son now sees it as a gift - not a disability, as I have always told him its not how disabled you are, its how abled you are. On a personal note for yourself, find out about any support groups in your area and join them! there are other people out there who feel exactly the same as you do and the fact that you can talk to them makes a massive difference. Involve your local Social Services - the things they can get for your family and the support they offer is invaluable. My local social services runs a 6 weekly drop in group for parents with disabled children and they have guest speakers - anyone from first aiders to the councils benefit team. If your local area does not offer this, then suggest it! Look after yourself, you are the most important person right now. On a financial note, get some help and support accessing the right benefits for you, D.L.A or Carers Allowance may be awarded, and tell tax credits too. Good luck! And remember, Einstein had ASD, so did Micheal Angelo and Bill Gates! Your child is in good company! xxx

cobbingstones

haggisneepsandtatties wrote: »

My son was diagnosed with Aspergers Syndrome when he has 5 - he is now a big, hairy 15 year old! Whilst it took a while to get my head round the diagnosis, my son now sees it as a gift - not a disability, as I have always told him its not how disabled you are, its how abled you are. On a personal note for yourself, find out about any support groups in your area and join them! there are other people out there who feel exactly the same as you do and the fact that you can talk to them makes a massive difference. Involve your local Social Services - the things they can get for your family and the support they offer is invaluable. My local social services runs a 6 weekly drop in group for parents with disabled children and they have guest speakers - anyone from first aiders to the councils benefit team. If your local area does not offer this, then suggest it! Look after yourself, you are the most important person right now. On a financial note, get some help and support accessing the right benefits for you, D.L.A or Carers Allowance may be awarded, and tell tax credits too. Good luck! And remember, Einstein had ASD, so did Micheal Angelo and Bill Gates! Your child is in good company! xxx

It's so lovely to see positive and thoughtful posts regarding ASD. :T

cobbingstones

mummyroysof3 wrote: »

i think the probable bit is due to waiting for some genetic test results but she thinks its highly likely and that having that in the paperwork will give strength to or support workers efforts to get him1 to1 support in place for september when he starts nursery.

Like others have said please take your time to digest all what is happening. It took me months to get my head around it all and at times I felt so sad for my son. Now, with a supportive school and a very supportive and informed family we are getting there!

Read books, look at the NAS website and join a support group.

All the very best.

Nicki

However prepared you think you are for the news, it is still a shock when it comes and takes a fair bit of adjustment. But he's still the same gorgeous little boy he was before he got the label, and his strengths and weaknesses which you already know about won't change just because you now know why he has them. The only thing which will change is that you may now be able to call on some extra support for him which wasn't previously available.

Corelli, genetic testing has come on in leaps and bounds in the last year, and two genes have been identified which if defective are indicative of autism. I didn't know that genetic testing was offered as standard now though, and AFAIK it isn't conclusive in that you can still be on the spectrum even if you don't have either of these two defective genes.

Be kind to yourself for the next few weeks mummyroy while you adjust to the news.

haggisneepsandtatties

cobbingstones wrote: »

It's so lovely to see positive and thoughtful posts regarding ASD. :T

Thank you! It is hard work getting your head round it, and adjusting appropriatly, but its well worth it. There is so much advice I want to give, but don't want to stick my nose in!
Just remember that there are people who know how you feel, and look after yourself! You are just as important as your son!

mummyroysof3

thankyou for the lovely suportive messages.