autism assesment.... whats involved

[MumOfThreeMonkeys]

just back from appointment with pead with dd (nearly 5) gdd, sensory issues, low muscle tone and SLD, pead recommended her to be assesed for ASD. Not a big shock as she has a lot of autisic traids but has good eye contact and talks way too much (never shuts up), i was just wondering whats involved in the assesment if anyone can give me full details please.

im prob not hte best person to answer this as i've just only had a dx for my ds. so answering this as much for the bump as anything. .

My experience: at 2 year check HV noticed lack of eye contract and massive melt-down (think entire doctors surgery noticed that!) Got referred through for more testing (though ASD not suggested, they simply said to help me manage his behaviour). About 3 months later had appoint with general paed which took 3 hours and involved lots of questions, some observation and (attempting) to play a few games, puzzles. Speech delay confirmed to 18month level (he as 2.3) and also referred to further social communcations testing. 3 months later had more detailed speech and social comms testing (seperately - in my experience speech is treated as its on entity regardless of asd). You will obviously not be concerned with teh speech stuff! But the social comms testing with a specialist was much like the first round with a general paed - questions, observations nad games. He was marking my responses to the questions agains some testing scoring mechanism they use (others might be able to help you more with what that is and if it can be found on the internets). It was at the end of this that the ASD diagnosis was made.

Hope this helps! Unfotunately it is hte nature of the beast in that my child (at this point) has very different symptons to yours and you might have a different process accordingly.

thanx for your help mum2fred and sorry to hear of your resent dx, speech is a big problem for my daughter, even thou she doesnt stop talking nothing she says makes sence or is even relevant to anything going on around her, so i am very concerned with the speech stuff, also she does not understand much of what we say to her, she attend SALT. she has been seen by education physc and he has classed her as severe LD with a mental age of 18 months (she's almost 5). she is starting primary school in sept and we have made the hard decsion of sending her to a special school as me and dh both agree that she would not survive an hour in main stream school (hoping we made the right decsion). we are still waiting for results of genetic tests and the pead thought that it would be a good idea to rule out or rule in autism which ever why u look at it. i just think that im getting desperate for a dx, hoping that it will give me better understanding of my dd.

thanx for taking the time to answer

thank you also starlightmckenzie

exact process varies from area to area (helpful eh....) so best bet is to phone up whoever she's referred to and ask, or see if you can get any useful info on local nhs trust site. DS was assessed at a joint clinic by a paed, ed psych and senior salt. the ed psych did a few tests, getting DS to copy patterns etc, and they watched how he played with the toys in the room etc. the paed asked loads of the usual background questions. So the assessment just took 1.5 hours, it wasn/t very thorough, in some areas they like to observe the kids for longer.

what if she has already got an ed psych report will they just use that or will she still need to be assessed again- she has just got all the assesments done for her statmenting including OT SALT and physio.

My understanding is that it is only a medical professional who can actually diagnose autism i.e. paediatrician. The ed psych is used as part of the assessment process but will not and cannot formally diagnose. Same applies to SALT, OT, etc. My guess is therefore that your paed will conduct additional assessments....could be wrong though.

My DS, who's 5 in July and in his final term of reception, recently underwent a general multi-agency assessment at the school's instigation (concerned about poor fine motor skills and poor concentration) which involved the OT visiting DS at school plus 2 x 2 hour sessions of clinical observations and interactions (SALT and OT) at an assessment centre whilst we went through questions with a family support worker and then a paed. We also had to complete a general questionnaire and sensory profile but no specific autism test.

There does seem to be huge variation from area to area, paed to paed, LEA to LEA in terms of how diagnoses are made. I believe the standard 'autism test' is the GARS (Gillams Autism Rating Scale) which I presume is what Starlight McKenzie is referring to.

We have yet to receive our formal report but the verbal DX confirmed problems with fine motor skills (which we completely agree with) and mild autism (which we don't).

Interestingly we have since been advised to seek a second opinion because the assessment process was not rigorous enough (DS was not assessed by an ed psych and we haven't done the GARS either). I would not necessarily agree with the view that inaccurate autism DX's do not happen...I guess time will tell what our second opinion confirms! But do bear in mind I come at this from the perspective of a parent who has no issues or concerns with her child outside of the fine motor issues (which have only arisen as he's progressed through the first year at school) and a slight query over receptive language/concentration (in a large group environment, we have no language issues at home).

Good luck with your assessment.

Was it GARS Starlight?

Someone appears to have cut and pasted part of it or a version of it here -

www.autism-pdd.net/testdump/test15739.htm

were these the kinds of questions?

a lot of my questions were on that example of GARS. But a quite a few not on there.

Like Mum2fred we were asked some similar questions to those on the link lingle posted, but nothing as structured.

I too believe it is supposedly good practice for the GARS to be completed as part of a formal autism assessment. It at least gives a standardised indication rather than more subjective 'observations' and 'interactions' which, let's face it, can to a certain extent be dependent on how compliant or otherwise your child might be feeling on the day of the assessment! I was also told that for school age children, it gives a more objective outcome if both parents and teacher complete individual copies for the results to be combined - I guess that lessens the risk of parents being 'in denial' etc as the teaching professional will inevitably be less emotional about it all.

It's not perfect, although I suppose no kind of standardised questionnaire ever can be. For example I went through it just now with DS in mind and there are a couple of things that he does do (licking or sniffing non-food things for example) but might do maybe /twice a fortnight or even once/twice a month, rather than once/twice in every six hour period. So it's not strictly accurate to give a single point, but equally you cannot score him zero because you can't say that you have 'never' seen him do it. Equally he will avoid eye contact from time to time, but only with people he doesn't know, and once he feels comfortable, perhaps an hour or two into a visit, hey presto they get eye contact. So again, can't say he's 'never' avoided eye contact but not really fair on DS to say he avoids it once/twice in every six hour period...

But anyway - thank you for posting the link lingle - I had been told about GARS but hadn't actually seen an extract before and it was very useful to have a read through.

Amberflower,

My immediate reaction was that the questionnaire (which is just a cut and paste extract I appreciate) seems disproportionately concerned with what Greenspan calls the "secondary" symptoms.

my ds has had severa assessments (puzzles, games, play) with the paed, observations at nursery, multi-agency meetings. We are now awaiting a 3DI (as far as I tell) a Q&A straight onto pc, so i guess can have some stat analysis done, what next I wonder....

Amberflower, when I completed this questinnaire (as I am not sure what was used for my son, he was diagnosed at 2.5 with childhood autism which I understand is similar to classic autism), my son only scored 36 having speech delay and not being able to initiate social communication with his peers due to lack of speech (he can't have conversation yet and he is 3.11).
Where does that leave us?

DS1 was diagnose usinga series of assessments and observations alongside parental reports etc, ds3 however was iagnosed with these over two yeras plus the use of a computer based assessment system which helped narrow it down as although he's obviously ASD, his intermittent eye contact can confuse professionals without a wide understanding of the disorder.

Starlight, when I did a search on google it came as something similar to classic autism. When he was diagnosed with autism, I did not have a clue about what it was or what it involved as I have never come across anybody who is autistic (nobody in the family) and being so ignorant at that time, I did not ask the paeditrician what it meant. I probably had the vision of children with autism being wheelchair bound. It's only recently (about six months ago), I kind of started analysing more as DD1 is progressing so well.

Star, only hope we have that he will be 4 in July, but the progress in him is amazing. I was not sure why he was diagnosed with classic autism as at the time of assessment, he was doing numbers, colours, shapes etc and verbal (only had few words), so my instinct now is that it should be HFA. He definitely has some ASD traits and to us from what I read on MN and internet, is on the mild side of the spectrum. What he does not have is obsession and repetitive behaviour although he did have some delayed echolalia (repeating DVDs out of context, doesnot do it anymore). My DH's family has genetic speech delay with half the family needing speech therapy, so who knows he might grow out of it.

But he is now asking what, where question, communicates very well, can't still have conversation, so can't do open questions. We also don't have any meltdowns (he used to have huge ones between 2-3), no sensory issues as far as we can tell, no behavioural problems at the moment, don't have any issues with change of routine, sleeping issues are getting better (he was not able to go back to sleep if woke up at night, for a month now seem to be settling back to sleep by himself). So lots of progress and which gives us hope that he might grow out of it.