Can anyone tell me about the assessment process for Aspergers/ HFA

[BigWeeHag]

Was told DS1 is "probably" not a typical little boy, and is most likely somewhere on the AS.

He has been referred on from the multi-disciplinary team. They were a bit vague about what happens next, other than it will happen in 3 or 4 months. TBH I didn't ask much as I just wanted to leave. Any advice or BTDT?

Thanks. DS is 4 1 1/2 BTW.

Been There Done That!

He's been having SALT for eighteen months, I actually have kept everything, it's been really useful as we moved areas 7 months ago - but were seeing SALT in this area within 3 months! They seem pretty on the ball, amazingly so compared to our last area!

Thanks x

Pointers please! Can you explain a little more? Do you mean that the parents diagnose?

Thanks Starlight. TBH I am completely shell shocked. I had been told he had sensory processing issues, and that that was all, and he has had ENT surgery recently, I had kind of closed the door on the problems and (stupidly) thought that was it! This appointment was supposed to be a review, I fully expected to be discharged and told he's just an eccentric wee boy.

I am actually an SEN professional - but I have always worked with young people who have PMLD and complex needs, so this is all very new and different to me. I am battling my family - my parents are both very angry, I haven't told PIL. My whole family work in SN provision, but all at the severe end, and just do not see it in my boy.

TBH, everything I presented to the Paed as evidence against ASD was turned around and presented as evidence for! She presented a very compelling arguement.

I was also quite upset that the first thing to happen after that consultation with the paed was a social worker offering to "help" me fill in the DLA forms. He's 4. All 4 year olds need this level of care, he isn't disabled FFS.

On the plus side, the physio showed me some techniques to help him fall more safely (he falls a LOT and doesn't put his hands out). Because he never crawled, he has to learn that hands go between you and the floor!

I guess a real positive is that I don't actually have a totally negative view of Autism, I think it has many positive features. Some of the people I like best in the whole world are severely autistic. So it's not neccessarily an awful thing, because with the right support, he can still be anything he wants to be.

Doesn't mean I don't keep crying for no reason though.

Sorry for long post!

It's the generalisations that are the problem isn't it? Ok so perhaps your son is on the ASD spectrum - ok, you'll digest that, see what you think. But then the social workers start to make assumptions about him...and you realise it's the first of many incorrect assumptions and generalisations that people might make going forwards. But the last thing you want to do is turn your back on anything that might actually meet his needs.....

I hope your parents can agree a truce while you all take a little time to assess.

Good to hear about the physio. I walked away from the whole process after "that" meeting (ie the one like yours) and turned to Greenspan instead, but I still really really appreciate the one insight that the SALT gave me (DS2 is a classic visual learner).

Hi BigWeeHag

Yes, I have BTDT and I can identify with absolutely everything you have written, so big hugs to you.

I have a now 5.5 year old DS who was DXed as mild ASD early last year when he was 4.10 and it came as a huge shock. Sounds as if there are similarities between your DS and mine - we went into our multi-agency assessment expecting to get dyspraxia as a DX if anything, because DS's main issues were sensory processing (he has no language issues but struggles to concentrate effectively) and problems with fine motor skills. Never even considered it could be ASD.

Processes do seem to vary from place to place but for us, following the multi agency review (for us this was SALT, OT and DX by paed), DS was referred for external OT sessions and an IEP was put in place for him at school which is reviewed termly, this includes things like him attending a 'socially speaking' group at school and continuing with OT within school. He has stuff like a wobble cushion to sit on and a fiddle toy to play with, to help him sit and concentrate in group sessions.

It is really hard to deal with these first few weeks, and I think you do just need to take a bit of time to just get your head round everything. To follow on though from what Starlight says, our paed is very much of the opinion that 'an ASD DX is negotiable' (her words, not mine) based on whether parents feel it will benefit their DCs or not. And I think backtolingle sums up our feelings exactly in her first paragraph. You don't want to reject help that may well be of great value for your DS, but you can't help feeling there will be a lot of cons as well as pros in accepting DX...

We initially requested a second opinion for our DS, but have now opted to leave DX in place as it is clear (and we have never denied) that DS does have some issues at school, and the IEP that has been put in place for him following DX has been really beneficial. What we have now agreed is an annual review of DS's progress and the report basically summarises that DS 'is making great progress and it is important to keep this under review because as he grows up he may develop coping strategies to the extent that he no longer meets the criteria for DX' etc etc. You may well find a similar approach is advocated for you if your DS is at this milder end of the spectrum.

The best advice I was given was to just focus on the individual needs of your child and try not to get too hung up on the actual 'label' they have been given. As you say, there are lots of positives to many autistic traits, and I am sure lots of people will post to say that your DS is still your DS and DX will not change that. But it is hard though. I sympathise hugely with the crying all the time thing. Even with all the progress DS has made, even knowing (from reading posts on here) that we are so so lucky to have got help for him so quickly - and there is not a day goes by that I am not hugely, deeply grateful for that - I still feel totally shell shocked in many ways.

If you want an officil diagnosis then you need to go via the health service - ie your GP who will refer you to a peadiatrician who will probably take advice from a SALT and possibly others. The education system (eg ed psycs, SENCOs) will assess need - our dd has been "assessed as having needs consistent with a dx of a SCD such as Asp" and so the school are doing various things but we have had to go through an entirely separate process (GP, pead, SALT, back to pead) to try to get an official diagnosis.

Thanks so much for your replies. I think that we are going to go with the flow for now - DS has SALT group and individual in place, and the OT wants to start seeing him in about 6 weeks. I guess I'll take the things that are helpful and try and ignore the stuff that is not!

Cat, this was his second Multi-Disciplinary team thing, he was referred by his SALT a year ago and had the first one in May.