Stressing out over autism assesment

[Fel1x]

DS1 is in the middle of his multi discipliniary assesment for ASD. We think he has Aspergers/mild ASD.
I'm just finding it so stressful!! I dont know why, just cant wait till its over now.
We've had 2 whole mornings of a group assesment wth other children and loads of preofessionals, this week DS has a SN HV doing a school visit plus a SALT assesment, then we've got another whole morning assesment next week and another meeting the week after.
It feels never ending!

They said at the first meeting that we'd be kept in the loop all the way through and wouldnt be sprung with anything at the end, it would all be discussed. But so far they've asked so many questions and made so many comments about DS but I have no idea what they are thinking still!

DS hasnt been displaying a lot of his 'different' behaviour in front of them, so am panicking that if all they ahve to go on is what DH and I say then they will doubt us!
This was reinforced last week when the HV asked me what we could do to try and get DS to display a 'tantrum' in front of them! He tantrums and hits me a lot, which I struggle with a lot, but it feels like they dont believe me and I feel awkward about engineering him to do it when he is not upset already!

On the other hand, if they doubt us then they are the experts and it would be a good thing for them to say 'he doesnt need a diagnosis' as that would mean a better prospect for his future! So I feel bad for wanting them to diagnose him too iyswim. Perhaps he is just young acting for his age and not on the spectrum at all...

I am thinking of writing a list this week of all the things he does that makes me concerned (so far in last 2 days he has escaped from the house twice, had a tantrum and been carried out of his swimming lesson and home with no shoes on, hidden when another child has visited the house and refused to talk to him etc). This doesnt seem 'normal' to me, but other times (at the assesment!!) he sits and plays with all the toys and talks nicely to the adults!!

Am so confused and stressed!!

He is 4.8 yrs old, forgot to say!

Have you had any of the standardised tests e.g. ADOS/ADI? They will examine behaviours in a structured way and should help highlight issues.

ASD is about more than tantrums. It is about the way the brain works and this can be examined, albeit in a limited way, by these tests.

I know what you mean as we have our dx appointmnet on Thurs and we have waited a year and a half to conclude the process.

I sympathise.

It took 14 hellish months of appointments with all sorts of professionals before we got a diagnosis of Asperger's for my son. It was extremely stressful. In one week, shortly before he was diagnosed, we saw 8 separate professionals over 5 days!

Like you - at least in the beginning - I was 50/50 about whether he had AS or was just a handful . As time went on, though, I became convinced that it was AS and it was only when I started really pushing the pros to make a diagnosis that they hurried it all along.

It is very hard to describe your child's worst behaviour / biggest difficulties without feeling like you are doing them down - for instance, my DS has awful days when he hits me and screams and is so defiant. But at other times he is the sunniest, most lovely little boy you could meet. I got so sick of 'complaining' about him to professionals . It felt disloyal.

In the end, though, the SENCo at his school said 'think of him on his worst day and think of how it impacts on him, on you, on the whole family - and describe that to everyone involved in diagnosing him'. It was hard to do, but it helped pain the picture to the 'experts'. And I'd definitely write it all down. I was able to get things very clear in my head - and became convinced that he did have AS - when I started writing things down (in our case, I had to do this for a statutory assessment, in order to get him more support at school). It really clarified what his problems were and made it clear to me that he definitely did have some issues beyond 'normal' stuff.

Good luck.

Think along the lines of the 'triad of impairments' - see this. Think about how your son's behaviour fits into these.

Bear in mind, AS children often present very strongly in one area and very mildly in the others (unlike classic autism, where they may struggle quite badly in all three areas). For instance, my son has very severe social interaction problems (at 5.5 he is like a 2 yr old - cannot share, wants to dominate all games, snatches, bites and hits if he doesnt get his own way), but he has only mildly problem with 'rigidity of thought' and his language problems are really only about reading expressions/body language, and very mild also.

excuse typos!

Thanks.
Meant to say these last few appts are the culmination of 18 months worth of paed appts and waiting lists, its just that this last bit is so intense is what is stressing me out!
Think I just needed to rant and let off a bit of steam.

Anna - DS is also not strongly showing up in all areas for ASD, but does show a lot of the signs I think.
He has no imaginary play whatsoever and never has, he also has real trouble socially in that he doesnt understand personal space, he interrupts constantly and doesnt really listen to what the other person is saying, just says what he wants to! He interacts really well with adults but isnt interested at all in other children (except for toddlers about 18 months old, who he makes a beeline for and usually grabs them for a tickle or to rub his head on their tummies! I have to follow him round constantly at play areas to stop him doing this!).
He has no sense of danger, he runs off a lot. Escapes from places a lot. Has tantrums daily, is increasingly violent with me, hitting, kicking and head butting.
He had a throat clearing noise that lasted over a year and was constant (literally every couple of seconds or so ALL the time he was awake) which has thankfully gone now.
He chews his clothes a lot.
He has been seeing a speech therapist for nearly a year now although his speech is on the lowest percentile of the 'normal' ranking so he is not classed as having an actual speech 'delay', he is still quite unclear in his pronounciation.
He is utterly obsessed with any kind of electronic games.

During his assesments so far, because he hasnt been stressed out and is enjoying playing with all the toys they've laid out, all he has shown the various professionals so far is that he doesnt play imaginatively and that he has no interest in playing with the other children there. All the other things are on my 'say so' and I kind of get the feeling thats not enough.
I dont know, perhaps I am over thinking it!

I will def write a list to take in to the next meeting. I didnt up till now as didnt want to be too pushy iyswim. Wanted them really to see for themselves.

debs - no they havent done any of those tests. They havent mentioned them either so I dont think they plan to.
I wish they would! It would be so much easier and better to do a more definitve test on him that gives a proper result rather than having to go on my words or on an assesment from a snapshot of a couple of days!
I wonder if its a simple thing to do -perhaps I should ask them if they could do it when we go again on Friday??

if you don't want to engineer tantrums (and I quite agree with you) - could you video incidents to show them? could you dh/dp weild the camera at weekends/evenings (or viceversa!) at what arenormally flashpoints.

then at least you have footage to show and discuss.

it is a long winded process. my dd1 is pretty severe (ASD), and it still took nearly 2 years ot get ehr dx - this is starting from the point where all she did was sit in a corner and scratch the wall (if left to her own devices), was non-verbal, etc etc.

they do like to draw t all out, and sometimes, the situations and settings are not ideal for displaying the problem behaviours. dd1 usedot shine is assessments, purely becasue she likes nothing better than full attention. it is when she has to share attention (particularly mine) that her real issues surface.

Brilliant idea! Thank you. I will try to do that this week. DH is away with work and its just me and the DCs so could be tricky but I will keep the camera handy and see what I can capture.

DS1 is exactly like your DD in that he is at his absolute best with lots of adults all giving him attention. Day to day he is a lot harder work and when he is hitting a flashpoint he is uncontrollable!!

Thanks for the video idea!

no problem

anyhtig at all will help - even a wonky angle clearly done with one hand as the other is restraining/stoppping headbanging etc. just the volume bit can be all you need. you are only trying to show that he is showing behaviours that are different form that of his peers, after all - you don't need the world's worst tantrum, or the best film of it.

Next assesment day is tomorrow and I'm feeling a little less stressed about it now
The SN HV went into DS's pre school yesterday and watched him for a couple of hours and had a really good talk with his teacher so I am really pleased that he has been observed in another environment which will show a different side of him. Even his teacher said it was a real eye opener for her to watch him so closely as normally she has so many to watch at once she doesnt pick up on how he is playing etc

Have also written and printed a list of all the things I want to remember to mention tomorrow, so am all prepared hopefully!

No luck on catching a tantrum on camera though, just too difficult to grab camera and turn it on at the right time with no arms free!

Any idea when it will all be over with a definitive answer?

Tomorrows one is the last assessment one and we have an appt next week without ds which is when we get a final diagnosis of whatever they have decided. So an end to this part of the stress is in sight!

Last assesment this morning. DS showed a lot more of his 'quirks' and the pre school observation apparently showed a lot of areas that he may need help with as well.
They have all agreed today that he has Aspergers, so we have an answer at last!
Formal meeting to go through reports and to get official diagnosis next week...

Thanks for the advice.

Fel1x Thank goodness that is over. Take a look at debs thread to see a discussion on whether it is better to insist on a dx of asd rather than apergers though.

Thank you.
Can you point me in the direction of that thread please? Have just been searching and havent been able to find it...