receiving a diagnosis of Mild autism - anybody else struggle to believe it?

[LiffeyBag]

I started another thread, but my head is all over the place and I titled it up wrong really.

I know my son is a very late talker, not toilet trained, has some autistic behaviours (not denying that, but not that many either), but I still don't think he actually is definitely autistic.

My sympathies, getting any kind of dx is tough, even when you really are expecting one. All I can say is that my ds is also dx ASD but he only meets two of the three criteria and displays none of the 'textbook' traits. The ASD label for him is more of a pointer than anything else - it gets him the right kind of help (PECS, 1-1 support, small class size at school, etc) - so even though it is a little unsatisfactory, there isn't really any other meaningful way to categorise him, IYSWIM. Although you feel that your ds isn't ASD, the label may be useful in obtaining help at school or getting some respite care (if you need it).

I'm always being told that the spectrum is very wide/broad, so I guess these days, there are many ways a person can present and still qualify for a full dx.

You just need time to get used to this new dx and in the meantime, your ds may continue to develop in all kinds of positive ways.

Thanks Manny, we're doing Pecs! Sort of, I am, he's not!!

Apparently on the 'triad of impairment' he meets the criteria in all categories. Tehy were just so certain about it.

I know they're experts but I feel that he never shows his best side around the experts.......

I know what you mean about 'best side' but tbh, it's what kids don't do, rather than what they do do, that gets them a dx.

Hello LiffeyBag

My DS2 has a dx of mild asd also. It was a bit shit getting the dx tbh but he gets all the help and support we need because of it - so from that perspective, it's been useful/helpful/couldn't have done without it.

The other thing I have found is that coz he has required a lot of speech therapy and his voice sounds different from other kids his age, being able to offer an explanation has been so helpful and vital - even with siblings, cousins, etc.

I echo what Manny says your DS will grow and develop in all sorts of ways.

Be kind to yourself it is a bit of a shock.

Raises hand.

Me - am currently going through the denial stage after receiving my son's diagnosis last week.

Have been reading books on how to play with children with ASD where they also describe how a non-autistic child would play. For a child with autism, my son sure does seem to have a lot in common with those considered not autistic.

I suppose that's the 'mild' element of it though. And I expect it takes a while to sink in.

However, I do recognise that my son has some developmental delays so at least a diagnosis will enable us to access certain services which I hope will help with this.

My sympathies are with you. I think I know exactly how you are feeling.

Me. But then I read and learned a lot about what autism is, and had to forget what I thought it was and accept the dx. It is tough. But it's not a death sentence, or even necessarily a label who defines what they can and will be. It's a label to describe a set of behaviours, or that's how I try to look at it.

Thanks everyone. I haven't even read his report yet!! I feel I can't quite face it today, the meeting was enough for one day!

They've given me reams of additional info about autism. So maybe after i've read it I@ll feel, ah, it's just a way of learning. LIke, when they said to me that my son was a visual learner that didn't phase me at all, so I will try and regard it like that.

Catski, I never initiated the checks, such as the mchat. All this was picked up on my behalf, I never pushed for it. My instinct was that he was delayed but that it would all fall into place. (although I do admit that his speech delay is now so delayed it has become a speech disorder).

Were you in the same boat? NOt pushing for these tests?

No...but i would have struggled to believe it when he was about 3-4 or even 5 or 6.
In the end ..he was 10...by then i was desperate for it and for some blardy help. I wish for his sake and mine we had got the dx a bit earlier.
Saying that though...there was still a period of shock and grief when they finally said confirmed it back to me.
He is the same boy he was yesterday liffey...with or without the dx.
He'll be ok

I did push for the tests Liffey - mainly after talking to the wonderful people on this forum. I kind of expected my son's speech to be delayed because he's in a bilingual household and was just surfing a bit to see if there was a particular age after which I should start to be concerned - that's when I came across The Importance Of Pointing and realised that at 16 months my son didn't do it (or follow a point).

I did the MCHAT myself at home which he failed at 16.5 months, although he would have passed it at 18 months, but by that stage we already had a referral. I just wanted someone who was qualified to do so (rather than friends and family) to tell me to stop being silly and go away, but none of them did.

Apart from the lack of non-verbal communication, I couldn't see much of a problem in the other areas of impairment (social interaction and imagination) - I mean, really, show me a 20 month old who lights pretend candles with pretend matches on a pretend birthday cake. Where are they, because I don't see a whole lot of social interaction and imaginative play at the playgroups we go to. Maybe they are all sipping martinis at cocktail parties and networking

I was very much like you in that I expected them to come back and say "hmm, we see what you mean and he might be in the 'at risk' area, but it's too early to tell" or something like that, but they didn't. They came back with a very clear diagnosis. I met again with the lead psychiatrist yesterday and quizzed him hard - 'are you SURE he's on the spectrum?' 'no, but I mean, are you REALLY SURE?' etc etc ad infinitum. But yes, they are quite sure that he meets the diagnostic criteria.

I think it's partly a shock because everyone in real life had been telling me I was mad to think that anything was wrong. Even now I wonder if it was a mistake to pursue my worries (my SIL told me I was 'ruining his childhood, you should just enjoy it'). I see other kids at playgroup who display traits and their parents are blissfully unaware. Sometimes ignorance is bliss. Rationally though, I know it's not about my state of bliss and me 'enjoying his childhood', it's about my son and his future. His best chance for a better prognosis are if he gets some help now.

I really do feel for you. It's a terrible shock, even if you've been preparing for it. I've found much comfort from the wisdom from the people on this board though.

Look after yourself - and stick to vodka not gin - gin makes you maudlin

Thanks for the tip about gin! don't want to show myself up infront of old school friends. I can relate to everything in your post. Thanks for posting.
rushing out the door now, for a vodka and cranberry! blast from the 90s!

I've replied to your other thread Liffey. Hope you're doing ok.

Don't forget to check out www.treatingautism.co.uk