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.

Couldn't agree with you more, Jimjams, and am left thinking that the main reason must be to keep the costs down - starting intervention at 18 months would be TOO EXPENSIVE. What of course they don't factor in is the expense (unquantifiable) of failing to provide early intervention, leaving children to fail and their parents to drive themselves mad thinking it's something they've done wrong.

DS1 would have failed the CHAT test at 18 months. I know, because I used to test and retest him constantly!

Jimjams we were reffered to CDC when dd was 12months - she was diagnosed as having a mild motor delay, no further help questions...shove out the door.

8 months later back to CDC see different paed, diagnosed as moderate globel development delay then put on a very long waiting list for help (what F*ing help?)

Its not just autism that goed unnoticed its most development problems Im afraid

Me too dinosau "ooh can you point to the ceiling?" nothing

It's the lifelong cost as well isn;t it- every study shows that early intervention is the key to a good outcome. All very short termist. They just make it more likely the children will end up needing lifelong care.

Fio2- I know all disabilities are short changed- I think autism could be a bit different as there is a very good screening test that can be done at 18 months specifically for autism (the CHAT)- its been shown to be a very good indicator- and yet children failing the test are still ignored and parents are told to "wait and see".- when studies have shown that those failing the CHAT at 18 months are almost certainly autistic- and if they're not they have a different communication disorder. Of course they are probably other screening test that could sort out mild delay form moderate etc but they don't bother. And appalling that you were given the dx and then shoved out the door.

We should get T-shirts printed "what f*ing help?" :0 :0

We could wear them to meetings....

tbh I think my dd would have failed the chat test too, I dont think she is autistic though just having problems communicating (that doesnt make sense I know!) And about being shoved out the door with no physio referal for a mild motor delay(!) dd only got to see a physio when she was 22months old, she took her first steps at 23 months old so it wasnt much use was it? Although the physio did take all the credit for getting her walking because she wasnt walking before she saw her!!

LOL about the T-shirts

I do understand too that autistic children benefit from earlier help, sorry. It is soo frustrating for evreyone isnt it? I remember how frustrated I used to feel that dd was having so many problems and no-one was helping her. Her school now is brilliant though, wish I had opushed for her to go sooner really!

Yep, ds1 would have definitely failed the CHAT test at 18 months old. He didn't use any pointing at all until 2.5yrs, and even now he can find it hard to follow someone else's pointing.

Earlier intervention with some form of SALT might have helped too. I know that a lot of NT children don't start talking until fairly late but I think that the alarm bells should have been ringing for our HV when ds1 wasn't even babbling by 18 months. Not even the simple vowel sounds that his brother could make at 5 or 6 months old. He was 2yrs old before he even made it on to the waiting list for a SALT referral!

His language development is improving nicely but it had to be learned in the same way that an NT child would learn a foreign language: nouns, verbs, prepositions.... I get annoyed when I see all these pilot schemes to teach primary school children foreign languages because "the earlier they start, the easier it is to learn". This is very true - so why can't they use some of that money to help children with communication problems to speak THEIR NATIVE LANGUAGE?? (I'm not knocking teaching children new languages btw.)

Is the CHAT test you are talking about the one you can do on-line. How do you know if you have failed it????

Yes you can do it on-line (although as usual I have absolutely no idea where it is! ). It's just a short test where you do things like asking your child to point at an object or to look at what you're pointing at. There's a separate part that the HV/doctor is supposed to do but it's fairly simple. It's more of a warning that there could be a problem rather than a definitive test.

coppertop- have you come across "teach me language?" we're still stuck at nouns so its no good for us- but its a language course for autistic children. It's very good.

KPB- the chat test is here

Oh fio2- my friend's portage worker got all the credit for potty training her dd- she didn't do a thing towards it!

the other thing you can do is search in google on protodeclarative pointing and autism- lack if it by 18 months is the key indicator of autism in a young child. That's why I'm so annoyed we were ignored. I know it was important which was why I told the SALT- I just didn't realise quite how important. Adding in the using adult hand as a tool etc and I must have been practically screaming autism. Grrrrrr

No, I haven't heard of "Teach me language". What sort of course is it? Does it have good reviews?

It's a book and set of worksheets. Basically you work through them step by step and it teaches all the bits that kiddies normally miss. I would say it was appropriate for primary age HFA. It tells you why they're teaching each thing as well. It;s well though of. It's here

Our experience was just like Jimjams, I think we could have done with the same trained monkey as someone who had any idea could have spotted something as early as 6 months in our son, I won't go into details as have said it before somewhere. Having what seems to be an NT baby now I can't believe the difference! We also got a rubbish dx which was "Severe Communication Disorder, possibly on the Autistic Spectrum", told to go away and "see what happens". Although we did get the obligatory 6 sessions of SLT which was like sticking a plaster on a wooden leg and put on the Portage waiting list. The difference for us was that my husband immmediately looked on the internet (advanced 7 years ago!), found an autism checklist and it totally matched our son, so we didn't wait to see what happened but contacted the NAS, got Gillian Baird's number, saw her and got a proper dx, all within a month. The original NHS Paed (who we still see and get on with), once he saw her dx, agreed totally and changed his dx. It probably helped that neither of us has ever been the type to wait and see about anything and we were very much together on it as parents who are at different stages can make things a lot harder.

Teach Me Language is highly recommended by everyone who uses it (not us yet) but I'm not sure you can buy it in the UK. Try Amazon, you never know, but you can look at info here It comes with a separate book of worksheets. In fact, my support group library has 2 copies....

Ooooh! Let me at your support group's library, Davros!

Our SALT is lovely and I know our monthly appointments are more than a lot of people get but ds1's progress seems to come on in spurts. Once he understands a concept he picks it up really quickly and we're left twiddling our thumbs until the next appointment. It would be useful to have access to more of the exercises that the SALT gives us to do but without trying to get too far ahead of ourselves IYSWIM.

dd2 would definitely have failed the CHAT test at 18 months and TBH doesn't really point now, occasionally when looking at a book and certainly can't follow a point. No one has yet mentioned autism, although she definitely has some autistic/sensory traits. She was seen by an ed psych last week, so shall be interested to read her report.

Agree that many professionals do seem to be very cautious of making an early diagnosis, when early intervention is shown to be so important. Surely the CHAT test could be incorporated very easily in the standard 18mth assessments done by HV's? Perhaps it is already in a way as I certainly remember the HV specifically asking me about pointing and pretend play. Cost/lack of time/resources seem to be the driving factors and these vary so much across the country

The thing that annoys me about myself- is that I knew that he was showing lots of signs of autism but I believed the platitudes. (Partly becuase everyone around me was saying I was mad to think he was auti). I used to have to hide all my autism books beneath my bed to avoid being shouted at. I think it would have been easier if he wasn't so passive, and easy going. I came across the picture of the "difficult" autistic baby but not really the easy one- and he wasn't like the difficult picture at all. He wasn't that different from ds2 until about 15 months - (they were similar enough for me to worry about ds2 until he was obviously pointing and understanding things like you, him, on behind, other way round etc).

We did almost go and see Gillian Baird when ds1 was 2 and a hlaf, but she had quite a long waiting list (even private), and was very expensive (I would say worth it now but we were still unsure- and I also half thought I was being neurotic). By the time we got to see her we would have moved from London.

It makes me cross that it is easy to spot in a very young child- if you ask the right questions- but no-one's bothering to do a thing about it.

I dont know my HV said most the HV she knows know didly squat about autism and development disorders

Yeah, the entire system needs to be overhauled. If they (the NHS/social services/LEA's) could even approach the requrements set out in the national plan for autism they would actually save zillions of pounds in the long run...

The main problem seems to be that initially there would have to be extra money put in. This is because although money would be saved through later childhood and adult life for those with developmental problems receiving 'decent' early intervention you cannot pull this money from the current 'batch' of 'older' people failed by the authorities when THEY were younger. Of course the return on this initial extra money would make the best performing investments in history look paltry...eventually the government(s) will accept this - in the meantime anyone who is not as stubborn as a mule, intelligent enough, does not have internet access, does not have some financial resources etc will be fobbed off and their child sentenced to underachieve in life

benandrex's dh

I used to hide my autism books too!

My personal pet hate was when I tried to explain why I was worried about ds1 and all I heard were variations of stories about children who hadn't started talking until they were x years old - with a brief pause before comments like "Well it might help if you talk/play/socialise more." It might have been my usual paranoia but I did get the impression that a lot of people around me thought it was my fault that ds1 wasn't like other children.

Hello RexandBen's dh! Welcome to Mumsnet.

well said RexandBen's dh.

Just the same here in retrospect although to be fair to our HV who suggested referring ds at age 3 I actually put it off. Partly because he did seem to be getting a bit better and I was putting my head in the sand a bit thinking "oh he'll be talking in 6 months time etc". I see that the CHAT test would have been very useful to us but I doubt if autism would have been dx at that stage. At least I would have known that something wasn't right and could have looked out for it sooner.

Anyway I thought diagnoses weren't made too early because some children grow up at different rates or can just be a bit behind, or is this just a load of cobblers?

I had a chat with our HV yesterday about dd (23 months) who isn't talking, hardly any single words even and she said just to wait 6 months as she may have made a dramatic improvement by then. She also suggested a few tactics to get her talking but they didn't seem very enlightening. I can't help but feel it is my 'fault' ( I know not very rational)

Ds1 was referred for SALT at 25 months. Could they not be persuaded to put dd's name on the waiting list for an assessment anyway? We had to wait 6mths for an appointment anyway so you could cancel it if dd didn't need it. Can parents request a SALT appointment directly without needing a referral? I can't remember which people you need to be referred for by someone else?

Thanks Jimjams, do they have any on-line for older children?? Or can this be used for 4-5 years?? I would just be really interested to see what result dd would have. Thanks