Early signs of autism

[Jimjams]

I'm reading a book at the moment (kind of browsing it really) called The Boy who Loved Windows- by Patricia Stacey. It's about her son who had lots of problems since birth. Anyway at 8 and a half months he was assessedn (this IS America ) and told to wait and see how he developed. Anyway the next passage contains this:

"MOre than 15 years of experience had taught her that even relatively subtle signs on babies and toddlers could turn into autism. She insisted that ours was a fight against time. "what looks like not much in a baby could be very serious in a toddler and devastating in a school age child" said Dawn. "In my pracice I've seen many babies with signs of autism go unnoticed by doctors and parents (I might dispute the parents bit but still) until they've receievd very serious diagnoses, sometimes veb years later"

This got me thinking about our first visit to the "autism specialist" SALT (referred on at my request). NOw DS1 had fairly good eye contact, and was affectionate and calm during the appointment BUT

I told her he couldn't point (he was 26 months)

I told her he couldn't follow a point

I told her he'd lost words

I told her he used an adult hand as a tool (using my hand to point rather than his- putting my hand on things he wanted etc etc).

I told her he was obsessed with lights

And she commented on his play (looking at things from funyy angles).

Now surely a TRAINED MONKEY could have spotted autism in all of that. Not so subtle- even if his eye contact was good and even if he came to me for a cuddle. Instead he was given a dx of "mild language delay" and we were sent away for 8 months (was meant to be 3 months but this was the NHS). In the emnd he wans't diagnosed for a year later. I just tink now what a wasted opportunity. Given the dx then we would have probably set up some sort of home programme. By the time we recieved the dx he had settled into a nursery.

I se the same thing happening to friends. My friend whose son imo is- at almost 4- showing some possible signs of HFA, AS- enough to be given extra help at nursery can't get past the behaviour team and pre-school advisory- with an occasional visit from an ed psych. She's nowhere near someone who is actually allowed to diagnose.

sorry but it makes me cross. Why not bring in the CHAT screen- that would pick up many children- and actually provide early intervention from 18 months.

Rant over- but that passage descriebd exactly what happened to us.

As an aside- the book is a bit rude about ABA- but even the woman who is being rude about it says that she thinks is is good for children who really can't imitate. This is my son- so it confirmed think that it is worthwhile and we have made the right decisioin going for it.

coppertop - she said they used to review language at 2 years and were often referring children but they usually had improved by 2.5. Apparently this 6 month period can show a big difference in language skills so now the benchmark is 2.5. I think I will nag though if things don't improve soon.

An example of her suggestion was to wait until dd asks for something - well I don't think she ever would! She tends to just walk up to the fridge and start taking the carton of juice out herself. I was told to let her ask for it. I tried this yesterday but ds just butted in behind and started talking at me (which he does almost constantly) and of course I was in the middle of making the dinner... it was easier just to grab the carton and pour it out.... (sigh) sorry didn't mean to monopolise this thread.

Eulalia - the trouble with the whole waiting 6 motnhs is that that's probably true for kiddies who aren't talking much but do pass the chat (eg ds2- now 26 months) but its not usually true for those who fail the CHAT. That's why I get cross with the whole "brothers uncle diudn;t sepak unitl he was 4" type stories. It's missing the point if brothers uncle was pointing, and communicating well in other ways.

It;s done at 18 months KPB becuase a delay in learng to point etc is an important feature of autism- tisa the dealy thats important iyswim. On a good day ds1 would pass the CHAT now (at 4.5) but he's still autistic. The sally anne test takes over as a useful test at 5

eulalia ds2 didn;t talk much at 2- he's saying loads now- still vey unlcear and I still suspect verbal dyspraxia but his language is great. He did pass the chat though so if your dd would have passed that at 18 months I wouldn't worry too much (he was referred to SALT at 2- no appointment thorugh yet though)

Jimjams - Can you access Sally Anne on the Internet???

Thanks jimjams. I must try the test on her. She certainly points, gestures etc but need to try the more complex bits such as following my point. trouble is our house is such a mess she won't know what I am pointing at! At the moment she seems to babble like a baby of a year younger alhtough the Ed Psy saw her in action when I was visiting schools and was most impressed with the way she sat up at a table, getting the crayons out and how she concentrated and 'talked' to the teacher so we shall see....

Good to hear your ds2 is coming along.

KPB - the Sally Anne test is to test 'Theory of Mind, which an NT person should have, ie being aware of the fact that other people have their own minds and thoughts. Autistic people are unware of this which is why for example my ds will ask me to sing a song they did at nursery even though I wasn't there! Children below about 5 would find this difficult anyway so no point in testing till around then, It is simple. Imagine Sally and Anne sitting together with a third person who puts an object (eg ball) underneath one cup (there are two cups there). Sally then leaves the room and Anne watches as the other person takes the ball out and puts it under hte other cup. Sally then re-enters the room and Anne is asked which cup does Sally think the ball would be under. An autistic person would tend to think it was the 2nd cup and not appreciate that Sally did not see the ball being moved.

My ds wouldn't even be able to understand the question, let alone answer it correctly!

KPB- do a search on Sally-Anne in mumsnet- I've posted to 2 sites- one isn't that good (sally and anne are in a pub and I got very confused ands gave the wrong answer- I forgot who was sally and who was anne :-) ) but one gives all the background- its written for psychology students and gives a series of extra questions you can ask to make sure they've understood. It's exactly what Eulalia said though. Myt ds1 is like hers :-)

Know what you mean about the mess Eulalia- I think its important they're not distracted and that you point at something they are interested in as well.

However having a sibling with SAL problems does of course make it more likely that they will have SAL problems. That's why I take everyone's platitudes about ds2 with a pinch of salt. Sure his speech is coming on, but it is WAY behind where it should be. Really I've taken to acting as if he has verbal dyspraxia and acting accordingly- it won't do him any harm if he hasn't. I'm off to a nancy kaufman workshop next mont. Partly for ds1, but really for ds2. If he does have verbal dyspraxia he's not going to get enough help (any?) from the NHS so I may as well learn how to do it myself. MUCH less frustrating than just waiting. The SALT service weren't very keen to accept his referral- they said he was too young (at 24 months) but my nursery manager pushed and his name went on the list. Pointless really as we'll probably just see a community therapist who will know bugger all about verbal dyspraxia anyway.

Jimjams - just looked it up and found the test. Not sure if it would be appropiate for dd as her understanding is limited, although she has a large vocab. Can't see her understanding it.
I did the CHAT test, before I realised it was 18 months, for her at 4.5 and the score was 28 which just said mild. Not sure if it means anything. Any advice greatly received

KPB- I don't think you get a score on the CHAT. You either pass or fail. Are you sure you don't mean something like the CARS. That gves you a score.

SORRY JIMJAMS - IT WAS THE INTERNET SCORING PROGRAM, THAT IS ON THE 'CHAT' (PAAINS) SITE. GOT CONFUSED!!!!

KPB, if you are looking for scoring type checklists I think this one seems quite sensitive ("PDD" is I think the US umbrella term for autistic spectrum), though of course no website system can do other than give guidelines.

But of course I'm not an expert and would like to know what those who really have experience think of this. Does it pick up the right kind of things to look into? Anyone?

PDD- is usually used to mean "mild" autism in the States. I scored that test and ds1 came out as 170 severe PDD- which I guess he is as he's moderately autistic. I think its quite good- the questions are the right sort of questions and it takes age into account.

Hi Binkie, Did the PDD test. Dd got 81, which meant mild PDD. I think the section that madde the difference was the SAL as she has a SAL disorder, although she does have mild autistic features - if you see what I mean.

Yes I do see - it means that the test isn't quite as sensitive as it might be, because the results are aggregated when in fact your dd's high scores are clustered in SAL. Hmm. Reason I think it's good is that for me it perfectly demonstrates the reality but also the "borderlineness" of my concerns about ds - the threshold score for PDD being 49 and I scored him at 46 (as against 10 for emphatically non-autistic but capable-of-getting-very-cross dd).

Still very interested in others' reactions.

Oh - sorry Jimjams, missed your comment - that was just what I was looking for. Thanks!

Ds1 scored 155 but I think that probably says more about my inability to answer the questions properly. He didn't do very well on the SAL bits (too much repetition and echolalia still) or the imaginative play section (although he is improving). Then again, if I'd done the same test for him even 6 months ago his score would have been even higher. He's definitely making good progress.

I think we've gone the other way coppertop. 2 years ago his score would have been better- as the SAL stuff wouldn't have been so dire

my dd scored 67 mild pdd ???????????????

Jimjams

Binkie I did this test on on DS1 a couple of times. He is borderline - the first time I did it he came in a few points under, the second time a few points over.

Must do it again some time soon.

Still going over in my mind this PDD test. I am quite confused that dd got such a high result. The Imaginary/symbolic play were all no answers. The social interaction were all either no or mild, so I can't see how they get their results. Some of the SAL answers were moderate as this is where a lot of her difficulties are! My dd has a language disorder, that I think is SPD, so is probably mildly on the spectrum so maybe that's it!!!! How accurate are these tests and am I qualified to rate these things? My ds (aged 6) scored - 0, not that I had any worries!!!! Sorry to ramble on but it is really bothering me!!!! We have doen something similar with the paed. and he said that dd wasn't on the spectrum but had significant language difficulties so I do feel confused!!! (He has seen her twice a year over 3 years).

KPB, I am so sorry if by that link I've made things more worrying for you. That test does say that for a reliable result it has to be administered by a professional, so scoring by a non-professional (eg parent) can only be a sort of indication that you might want to take things further ... which I know you have been trying to do. You've said your dd is in a language unit you're happy with - is the concern that she just might have other needs which aren't being met by the help she's already getting?

Interesting - DS1 scored 61, putting him in the mild pdd range, even though I was able to put "resolved" against quite a few of the issues.

Oh well. He's making good progress, doing things we thought he'd never cope with, etc etc.

I did this test on Ben pre-dx and he got a score of moderate PDD AND I was being a bit generous with his abilities

He was soon after diagnosed with childhood autism - at the severe end of ASD by Gilly Baird. I have done the test recently after 5 months of ABA and he got a score of mild PDD - so I was so happy!

But remember it is not a definite diagnosis and doesnt replace a good developmental paed...

i am taking the test with a pinch of salt seeing as it says my dd has mild pdd!! ignorance is a wonderful thing

seriously though any child with communication problems may be deemed autistic by that test, dont you think? or is it me?