Does anyone know anything about pre-autism?

[Bluebirdonmyshoulder]

Firstly I really apologise if anything I'm about to ask is controversial.

My DD has a rare chromosome disorder and I've been doing some more research about it recently. Autism is not considered a feature of her condition, however I did discover one reference to children with her condition having 'autistic tendencies' that they grew out of.

DH and I have been worried for a while about a couple of things that could be considered autistic tendencies, although we're conscious our concerns stem from a very general and limited knowledge of what constitutes autistic tendencies.

However we've discovered this website for the Parent Infant Clinic which talks about pre-autism, and going through the checklist, DD does have more than 3. I think it calls it 'pre' autism as they state that with early intervention, autism can be avoided. (Sorry if that seems too much like 'cured', I mean no offence). There also seems to be some veiled references on the site to pre-autism being due to something the parents are not doing which is ringing alarm bells for me.

My question is, is pre-autism a recognised condition and can some form of early intervention lessen its severity? Has anyone ever heard of or dealt with this clinic?

Thanks for reading.

[bialystockandbloom]

Very brief as I only have a sec, but there's a recognised term for "childhood autism", referring to young children who may show autistic tendancies/traits/characteristics but then may not be given a diagnosis. Not sure if it's the same as 'pre-autism' (which I haven't heard of). Also, it may not mean that the child isn't on the autistic spectrum of course, just not 'enough' to get a diagnosis. I expect many here can relate to that

[bialystockandbloom]

Just had a very quick look at that website - looks rather misleading to me. A child cannot be 'cured' of autism. With the right early intervention, on some particular children, symptoms can be massively improved to the point where (as I said in earlier post) a child might slip through the net of diagnosis, and many of the 'traits' traditionallly associated iwth autism might be massively minimised (eg stimming, lack of interaction etc). This is the case for my ds, actually, but he is in no way not autistic! Think that website might give false hope to many parents at the early stages

[bialystockandbloom]

Sorry another post! Actually, the service offered looks pretty good, and would almost certainly help, especially as they say, at the early stages when the brain is indeed more flexible (at least, the developmental pathway is more easily influenced). But any use of 'cure' is not to be trusted!

[Bluebirdonmyshoulder]

Thank you bialy, really useful viewpoint.

My gut feeling was that they were over-egging the 'cure' but that what is offered may nevertheless be very useful.

[ouryve]

Are you feeling flush? £29,000 for 3 weeks therapy - and that's at 2006 prices.
www.telegraph.co.uk/news/uknews/3344408/Babies-on-the-couch.html

And because I'd want to read around before parting with that sort of money for anything:
www.quackometer.net/blog/2012/02/ipan-preautistic-children.html
penumbrage.com/tag/stella-acquarone/

On a personal level, I was sort of excited that the site for the clinic has a "resources" page. It's good that they want to help all parents, even those who can't afford their services, no? No. It's all stuff for sale, including a BBC open university documentary for £20.

As you might guess, I'd be wary.

[claw2]

3 months seems early to look for 'signs' of autism and the signs listed could be difficult to spot the difference between normal development or not (although early intervention is good). I suppose the danger could be a 3 month old is assessed to be 'pre' and the child could in fact never develop autism regardless, will that be seen as 'cured'? How would improvement/progress be measured?

I did read research about some sort of scans they were doing with siblings of ASD children, out of the 100 children, something like 28 of those went on to meet the criteria for a dx of ASD later in life. The scans did show a difference in 'white matter development' in the brain, but that more studies were needed for various reasons.

www.autismspeaks.org/science/science-news/top-ten-lists/2012/discovery-pre-symptom-marker-autism

[claw2]

"To make sure your baby is free of the disease of autism" and "cures"

[Bluebirdonmyshoulder]

Thank you all very much and those links are incredibly informative.

It seems my alarm bells were right to ring. I had no idea the course cost £29,000. Wow. That's ridiculous and a bad sign in itself.

I bloody love MNSN, where else would you find such wisdom and expertise for less than £29,000.

[ouryve]

The whole concept of the site seems quite predatory. Let's prey on worried mothers (who might already be vulnerable if they have PND) and charge them £250 an hour for some unproven therapy to help prevent them from giving their baby teh autism.

And for what they charge, you'd think they could afford an actual medical person to proof read the site. This error is still there "Autism, consequently, is often confused with Asbergers" and as for this bullshit - I'm lost for words: "In contrast, Aspergers is a personality disorder and the onset of these symptoms is usually around age 5. The common disorder for Autistic children is typically in the area of poor socialization; while those with Aspergers tend to be much more vocal." And, more bollocksy than a pile of bollocks: " It is not that babies with autism can not communicate, rather they do not have the motivation to make sounds or interact with people." The theory of autism as a psychosis (hence the psychoanalysis they charge so handsomely for) is even falling out of favour in many parts of France, now.

[coppertop]

The whole site seems so odd, right down to referring to autism as a disease.

I wouldn't be rushing to give my money to anyone who claims they can diagnose a child they've never actually met. If it was as easy as watching a DVD of a child, the NHS would probably save a fortune.

[lougle]

"It is not that babies with autism can not communicate, rather they do not have the motivation to make sounds or interact with people."

This bit is possibly poorly worded, but I see what they're saying there. If children with autism don't have the functional skill of communication, which is the desire or motivation to make a reciprocal exchange. I'm not explaining myself very well, but that's the whole basis of PECS, isn't it? To teach the child that they get something good when they communicate, to show that it's worth the effort.

The rest is absolute trot.

[ouryve]

It gives the impression that people with autism are silent. Mine never bloody shut up - even the non-speaking one!

[lougle]

I didn't read it like that, ouryve, but I see what you are saying now.

[ouryve]

Intrigued by this, I pulled out my copy of the Science and Fiction of Autism to see what the author had to say on the subject. As expected, there's quite a lengthy discussion of the psychodynamic theory of autism in there. It would be interesting to see what research it is that Stella Acquarone claims supports her psychoanalytical methods.

[Bluebirdonmyshoulder]

Thanks again everyone and we won't be contacting this place.

[Davros]

If I had known what to look for, I could have seen autism in DS from 3 months. From 3 days in fact! But it wasn't "pre-autism", it was bloody autism!
I do remember Gilly Baued saying that there has always been a small percentage who will "recover" or develop out if it, 1% I seem to think, but that had not changed for decades at the time I heard it 10 years or do ago. Maybe they have come across some if the small percentage and think what they do is having some effect Bhutto Psychotherapy, see previous threads. At least The Tavistock doesn't charge directly, just takes funds from the NHS.

[Davros]

Gilly Baird - stupid phone!

[LondonDad0]

I've seen this thread on pre-autism and I wanted to add some positive points as my son was supported by ipAn and as a family we are very lucky.

My son was 18 months when we (not ipAn) determined that our son was not developing as we expected and worked out for ourselves that it was probably autism although too early to formally label. He had typical traits such as lack of eye contact, pointing, ordering objects etc. We went to our health authority and had very good support but it was limited as to what they could provide.

We found out about ipAn and had an assessment. It was very clear that this assessment was to determine if the traits of autism were really present and if they felt that they could actually help. In our case they felt that they could, which was very lucky as I had just lost my office job and ipAn supported by providing the therapy services.

The outcome for my son is that instead of going to a special needs school, he is now mainstreamed. He is statemented and still needs support but the outlook is so much more positive then we could have hoped for. The approach also looks at the family, not just the child and that was very supportive in helping us to support our son.

[PorridgeLover]

Hmmmmmm

[mymatemax]

yep, I spotted differences in ds2 from birth.
It was the brain damage, hence the autism!

That website looks total BOLLOCKS to me!

[ajmc67]

Totally agree that this website is garbage! The English is appalling and the grammar is atrocious...totally unprofessional...and I only read through one page. I wouldn't give them the time of day, let alone even a pound of my money.

[StUmbrageinSkelt]

So how much did you pay London Dad? And you seem to be saying your child is still autistic but things are more positive. How the hell do you know that?

[LondonDad0]

We contributed what we could afford.

It is 4 years since we received help and we have seen huge progress and continue to do so. When we got help, our son was not pointing, making eye contact, talking (he had stopped talking and was making various sounds), he could not make decisions like choosing drinks and lots of other traits. He was also beginning to get angry because he could not express himself. As I understand it at this age (2-3) key language skills are laid down and will be difficult to pick up later if they have been delayed. My belief is that the earlier that you support and the more that you can do, the better the outcome.

We had the intensive ipAn support over 3 weeks followed by ipAn therapists coming to our sons nursery for an hour once or twice a week or to our house. They continued to support over 2 years.

He progresses in school and out and is in the normal school year for his age. It is difficult to describe what it is that demonstrates why things are so positive but by example as social communication is one of the most difficult areas, at school he now has quite a few friends in his class. They like him and he likes them and they ask to go to each others houses, parties etc. None of his class mates know that he is on the spectrum. Some of the autism traits seem to be gone or greatly reduced, such as, aligning objects, eye contact, lying on the floor watching wheels spin. He needs speech therapy as his language skills still need help but it is not holding him back at school or with friends. I suspect he will continue to need additional support but based on where he is today I'm hopeful he will continue to progress and develop well.