ASD test results - feel devastated

[honeybrown]

My ds has just had a speech and language assessment which indicates that he has ASD. He is 2 years 2 months and has the usual associated behaviours. I feel totally devastated, panic stricken and very alone and whilst we still don't know the extent of his difficulties (we're waiting further assessment) I am already panicking about the future.
I would be grateful for any of your words of wisdom and advice.

Meant to add that I have suspected that there was something wrong for months - my ds didn't point, has very poor eye contact, doesn't attempt to speak, has very repetitive play patterns, gets stuck in routines, hates crowds and unfamiliar places/people. All the time I was fobbed off with "he'll grow out of it". I feel so angry with all the wasted time.

Go easy on yourself hb. You have a long journey ahead and he's very young for you to be making predictions, or anyone else for that matter. Try to think of the positives - you're fortunate that he's got a dx so soon as early intervention gives our children the best chance for the future.

Remember though, he's the same little boy you loved yesterday and he'll be the same little boy tomorrow, all that's changed is that he may have ASD.

Look after yourself.

Sorry, just read that back and you say that there is indication of ASD not a dx. Same applies though.

The Speech Therapist indicated that the diagnosis was really a formality but that ds would need to be seen by a Psychologist to confirm this and for the extent of his difficulties to be assessed. She thought that ds had disordered development as his physical development is good (eg. hand eye co-ordination is good) yet he is very delayed as far as communication, social skills and imaginative play is concerned.
Of course he is still the same darling boy he was yesterday but I can't help worrying about the hurdles he will have to face. I think time will probably help me get this in perspective (we only had the results 2 days ago) but right now it feels dire.

Hi,
My daughter has the same symptoms and the health visitor has referred her to a specialist pediatrician (on wed) she said it could take two months, my daughter is 22 months old. Also she wont refer her to a speech therapist until shes two, but has told us to go to a speech and language drop in clinic asap.

I have had a feeling for a while and suspected ASD, now i suspect SPLD, which is a type of autism, but its a matter of time to see.
I try to think of my daughter as special, not different.

How long did it take for your ds to see a specialist?

xx

HB, we were also told that assessment would be a formality and diagnosis would be confirmed by it, yet the outcome was very vague and woolly and it was a further two years before we got a definite dx by taking J for assessment at a specialist ASD clinic. However, I don't want to alarm you about this. J has AS and I do believe that the team who assessed him first were a bit obsessed with getting all the boxes ticked rather than thinking sensibly about it. They seemed determined that they had to give a definite dx or none at all. There was no doubt at the specialist assessment. It seems from your description that your child's difficulties are more obvious than J's so hopefully you won't have the same problem getting a dx for him, but do be prepared that you might not - the world of autism is full of people who have had to fight for recognition of their child's problems.

Good luck.

I've just started a blog/review site concerning autism. Click here for the pre-diagnosis page, not much on there yet (just started), but my aim is for it to provide the sort of information that you only ever here from other parents (the sort of stuff professionals should tell you but never do!)

2 years 2 months is about the absolute earliest you would be able to get anyone to take you seriously, please don't feel you've wasted time, you haven't at all- it's still very very early days.

here? good grief! hear I mean!

honeybrown, my DS was diagnosed when he was 2 and 2 months, exactly a year ago. It does get better for you. You must be devastated at the moment, but do take one step at the time and look after yourself. Talk to people, make sure you have support and that you don't attempt to do this alone. There is a lot of help available and you are in a good situation as your DS is so little still, a lot can be done with early interventions.

Gess's site is brilliant and an excellent source for info for you. I am blogging on here about raising an autistic child, usually daily, sometimes it's very hard work but even so I am so grateful that DS is who he is. If everything else fails, a big glass of wine in the evening tends to make everything better!
love
kitegirl

hello,
my son is nearly 11 now but I can remember his diagnosis at 2 years like it was yesterday.
You have had lots of good advice already and I agree wholeheartedly - your child is very young to be contemplating outcomes and intervention makes huge differences with different kids ( gfcf and EFA's were the most important for Charlie). Research, trust your instincts and recognise that your feelings for your child have shifted but not changed - your love is untouched it is just fear/guilt/regret that will confuse you for a while.
Looking back the only thing I wish I had realised was that we have to grieve. We feel guilty if we feel grief because that seems wrong and disloyal to the child we still love so much. But we DO need to grieve for the liofe we expected to live - the ordinary gym kit, spelling tests and homework lives we expected to watch played out.
Our kids lives are different and therefore our lives become so and we are entitled to regret that.
I didn't want much ( I thought) three healthy kids, a home, just an average life. Now I see how precious that is and how lucky those who are gifted that. But once you grieve and adjust ( i don't say accept) you can see that life can be just as blessed. I wouldn't change the life I have with all my kids and Charlie is an integral part of that. He is loving and affectionate and funny - just the boy he always was.
Let your heart break - its OK - but then see your child and realise that the only thing that has changed is what you thought was going to happen. It will be hard but it will be Ok. You'll be fine

Thank you.... Whilst I'm still feeling quite up and down, I feel heartened by your replies. One day at a time and lots of loving exactly who my darling ds is!

Hi just wanted to add my support.

My son has AS and ADD. I always knew there was something a bit strange about him and have had to push for help at school. He is on the higher functioning end of the spectrum but I was still devastated when I got the diagnosis. It is perfectly natural and will take you a few months to come to terms with so take your time and be nice to yourself. There are so many people here who have gone through what you are going through so please keep posting if you find it helpful. The sooner you get a diagnosis the quicker relevant help can be provided.

Amazingly, I have just heard from our HV that our appointment with the Comm Paed will be in two weeks time although she questions its importance given the info we already have. DS has been referred to speech and language therapy and there is talk about PECS (which is something I've never heard of.)
I know that 2 years 2 months is a fairly average age to receive help but the Therapist we saw said that this is merely down to budgets . I'm grateful that I'm in a related field and know a little about negotiating bureaucracy otherwise I shudder to think when this would have been picked up.
I'm still reading the boards/blogs and trying to pick up info but I need more information about how greatly ds is affected before doing much more research. Thank you for all the links.

Ho Honey.So sorry you are feeling down.
As a salt working in this field, I would reiterate that this is not late.You have in fact been picked up fairly early.

Can I also tell you that PECS is a truly wonderful thing,one of the best systems I have ever used in 12 years of being a salt.

At some stage it would probably be advisable to go on a 2 day PECS training course (in our area,we have them on site for parents and professionals)Pyramid provide that training here in UK. I'll do yuo a link...

Info. on PECS

honeybrown- don't expect to be given much info on how your child is affected as the prognosis in a young child is incredibly difficult to give. We were initially told that ds1 was very mild, he isn't, and conversely I know many children who appeared much worse than him at 2 who are streets ahead now. For this sort of reason many clinicians now avoid it and just say"on the autistic spectrum".

Would agree with moondog about PECS, and the pyramid (PECS) course. Pyramid are running a 2 day workshop just for parents this autumn (usually its parents and professionals- there would be advantages to a parents only one).

Yes would agree with Gess on that.

Thanks for the links. The SALT assessing DS said that she used PECS and really found it useful.
I don't want to drone on about how devastated I feel but I feel like we have been plucked out of one world and thrown into another. The whole ASD "thing" is a huge topic of which I know very little. However I appreciate that we are at the beginning of our journey and am grateful for all your words of wisdom, so please bear with me.
Saying all this, I have just spent a fabulous hour out in the garden in the rain with my ds and dd, making gunky sand and mud pies. Sometimes I guess the "difficult" things in life actually make you appreciate the truly lovely moments too.

Honeybrown, I don't have much to add, but wanted to offer you support and best wishes.

I think your feeling of being dropped into another world is one most of us can relate to, give yourself time and be kind to yourself.

There are lots of interventions and therapies and if you want to read about things that other families have done you may start to get a sense of what might suit your ds, and you.

Really worth considering the gfcf diet, I would say. It makes a difference to quite a lot of people, though not all. And I would echo what other people have said about not expecting too much in the way of prognoses (?), asd really doesn't seem to work like that.

There is a lot of wisdom and support on mn from gess et al, wish I'd known about it then.

Best wishes to you all xx

your certainly not alone here HB.

there are a great many of us who have children with ASD, much more than i ever thought possible when i first joined.

take each day as it comes and try not to google. you undoubtedly find horror stories that terrify you and confuse you even more.

if there are any specific concerns please dont feel embarassed to ask about it here, between the posters in this section particularly we have a wealth of knowldeg that probably outweighs most GP's

Just wanting to send you good wishes. At difficult times we look for answers when often no answers are available. Try not to look forward too far (I know its difficult), be kind to yourself and allow yourself a little time.

take care

Thankyou everyone. I have just re-read the posts and am amazed at how rational my own posts seem to be. In reality I feel hopeful one minute, tearful and distraught the next. I lost my father about 18 months ago and what I'm feeling isn't disimilar

Hi HB, my DS was dx at 2 (his 2nd birthday) which was very young. You really have not wasted time at all, I know others have said this, but its true. If you do want to look for info I would recommend using MN as this is when its at its best and also the NAS website, possibly find out if they have a Branch near you, but only when you are ready. Don't be fobbed off about whether the Dev Paed appt is "important" or "worth it", IT IS!!! Even though you may well be able to get support and choose how to deal with things, access to a Dev Paed and a formal dx from one will be worth its weight in gold.