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Shock diagnosis - My son has ASD - whereto from here?

(16 Posts)
mamadadawahwah Wed 06-Jul-05 13:36:01

I have read other threads saying just the same thing as I am saying and until this or similar happens with your child, (God forbid) well its just hard to put into words.

Just came back from the child development clinic and advised my ds of 2.5 yrs has ASD. I dont even know why I am telling you all this, but cant bear to tell my husband as he is at work and dont really want to tell the family yet as I dont know what to tell them.

Maybe, if you have gone through this you could share how you dealt with this shock initially.

I had a gut feeling (as mothers do) that this would be the diagnosis but of course never dared to believe it.

I am torn between wanting to do everything at once, start my own group, etc, to taking a week off and bawling my eyes out. I suppose everything happens for a reason, but I sure cant see the reason in this. THe wonderful future I had planned for my son seems to be in pieces now due to the lack of assurance of what is going to happen. He could improve, or he could regress. Nobody knows.

If anyone has a child of my age, maybe you could let me know what programs/therapies/reading you have done to learn about ASD.

thanks for reading.

littlerach Wed 06-Jul-05 13:43:13

No experience but bumping it up for you.

jenk1 Wed 06-Jul-05 13:43:28

gutted for u we have been told our ds has suspected asperger syndrome and are waiting specialist help, i didnt stop crying for a week, but u will feel positive in a few days
BIG HUGS

Byn Wed 06-Jul-05 14:11:32

I work in a nursery with autistic children your son's age. He might not have the exact future you had planned for him (but he probably wouldn't have even if he didn't have an ASD) and he can still be a happy, healthy, lovely child and have a successful and fulfilling life.

spursmum Wed 06-Jul-05 15:56:22

i know everything you're going through. I've just been told that my ds (3 1/2) has asd. it's broken my heart! But i just think about Misdee's(I've known her for 15 years) problems and everything doesn't seem so bad. Just be glad that he is healthy. hugs 4 u.

coppertop Wed 06-Jul-05 16:05:22

I'm so sorry you're going through this MDWW. I think it's still a big shock even when you are expecting it. It's one thing to tell yourself that your ds has ASD but it hits hardest when someone else tells you.

I have 2 boys with ASD. The youngest is about the same age as your ds. I got a lot of information from the NAS site here

I also learnt a lot from forums like mumsnet and krism .

mamadadawahwah Wed 06-Jul-05 16:09:11

thanks for all your messages. Coppertop what is Krism? What is this an acronym for?

Have you done much reading on the subject? or is that a stupid question.. I am sure you have. I only just scanned through info on asd cause I didnt think it would apply to my ds. Now i will have to read it thoroughly.

coppertop Wed 06-Jul-05 16:19:30

I think the name Krism comes from the name of one of the people who run the site - Kris. As well as the kind of help you'd find on here it also has a large resources section with links to information about all aspects of ASD as well as recommendations for books.

I read a lot of ASD books back when ds1 was a toddler. That was about 3 years ago so I'm not sure of all of them. Tony Attwood writes well on the subject. I also read some of the more biographical books like "George & Sam" by Charlotte Moore and "Multi-Coloured Mayhem" by Jacqui Jackson. The NAS have a large collection of books. There is also the Jessica Kingsley publishers site (sorry I don't know the address but it should be easy to find using Google).

The thing to remember when reading is that no children on the spectrum are the same and so what applies to one child will not necessarily apply to the other. Ds1 and ds2 are similar in some ways but complete opposites in other ways.

mamadadawahwah Wed 06-Jul-05 16:20:40

thanks coppertop. !

bambi06 Wed 06-Jul-05 16:39:14

which area are you in as there are parent support groups in different areas, i`m one in bromley/london

bambi06 Wed 06-Jul-05 16:42:12

also check out your local autistic trust as they are supposed to be there the minute you are diagnosed and be there for support in any way they can and i`m very pleased to say that my local one are brilliant and very helpful. cat me if youwant any more info or just someone to talk to as i know how you feel, i felt totally isolated at first and thought who i could tell ie my friends that wouldnt be judgemental and all of a sudden you feel you have this guilty secret and i`m opnly just coming to terms in telling people

shey Wed 06-Jul-05 18:17:48

bambi06 I have never heard of a local autistic trust, is this run by the nhs?
mamadadawahwah, I know exactly how you are feeling. We were told in May that our DS has ASD. We have had two other diagnoses saying not ASD but who knows which one is correct. It was overwhelming when we started along the path to that diagnosis last Sept. I spent many nights crying over the future my son would not have. Pretty quickly I got into the mindset of think of today, and take one day at a time. We are exploring new therapies all the time and everyone has been great. (sadly most of this privately as NHS have not given any support/ideas but a label.)
Our DS is very happy and we have made a difference to his life over the last few months by recognising certain things need to be different for him. Just once in a while I get a little sad when my nt daughter does something DS probably will never do but these thoughts are bearable. It does help to be doing things! Very happy to chat if that helps. Do CAT me!

bambi06 Wed 06-Jul-05 18:22:08

each borough supposedly runs there own charity based autistic trust, try looking online for your local or through nas maybe ?

Socci Wed 06-Jul-05 18:44:19

Message withdrawn

SoBlue Wed 06-Jul-05 19:33:21

Its like their life flashing before your eyes but not the one you envisioned. The thing iv learnt now my ds(4 asd) is progressing is that even when he's not communicating, he's neither deaf/blind. He's storing it up and hopefully it will come out one day. My ds is now repeating/copying stuff which i never thought he was taking in at the time. So none of my efforts were wasted, one day he will suprise you. My ds has took off in the last 6m before that it was all pretty minimal. Now he can put a sentence together and write the 1st 2 letters of his name. HTH

onlyjoking Wed 06-Jul-05 19:53:54

sorry to hear about your DS DX of autism, i remember being in tears for a long time when my three were DX they all got a DX within a year, i think we were in shock when my twin girls were DX and then a year later my son was DX and the thing we found really hard was that all the things we thought we would do for the girls/ with the girls was put to the back of our minds and we felt safe in the thought that we would do them with our son so when he was DX that really was extremely difficult to accept, more difficult because one minute we had a 16 month old who was talking and interacting starting to use the potty ect then overnight he stopped talking stopped playing wouldn't let us touch him and couldn't even look at us and he spent all his time banging his head on the floor and lining things up, we felt our son had been swopped and they were awful times, BUT we got through it and now we have much better times yes there will always be struggles, one of the very best things are the other parents that i have met who also have kids with additional needs they are great and we have gained so much knowledge and support from other parents make contact with a group find some other parents and i promise you things will seem much brighter.
take care.

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