Here some suggested organisations that offer expert advice on SN.

Does anyone know anything about pre-autism?

(28 Posts)
Bluebirdonmyshoulder Wed 03-Jul-13 17:47:08

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 Wed 03-Jul-13 18:19:44

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 wink

bialystockandbloom Wed 03-Jul-13 18:23:25

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 sad

bialystockandbloom Wed 03-Jul-13 18:25:39

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 Wed 03-Jul-13 18:41:14

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 Wed 03-Jul-13 18:59:57

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 Wed 03-Jul-13 19:11:04

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 Wed 03-Jul-13 19:26:03

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

zzzzz Wed 03-Jul-13 19:51:27

I would back away slowly and then run far far away.

Please make your paediatrician aware of these people.

Bluebirdonmyshoulder Wed 03-Jul-13 20:05:25

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 Wed 03-Jul-13 21:18:09

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 Wed 03-Jul-13 21:37:45

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

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 Wed 03-Jul-13 21:50:09

"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 Wed 03-Jul-13 22:04:49

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

lougle Wed 03-Jul-13 22:09:03

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

zzzzz Wed 03-Jul-13 22:11:13

I think it's more likely that they have not connected the sounds with meaning. If autistic children have the same language deficits that ds has, my interpretation would be that they can't hear the words in speech in the early years.

£29,000 is a shameful ammount of money to be asking vulnerable parents to cough up for 3weeks quackery.

ouryve Thu 04-Jul-13 17:01:40

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 Thu 04-Jul-13 18:36:00

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

Davros Thu 04-Jul-13 19:48:43

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 Thu 04-Jul-13 19:49:24

Gilly Baird - stupid phone!

LondonDad0 Sat 31-Aug-13 18:10:19

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 Sat 31-Aug-13 20:29:53

Hmmmmmm

mymatemax Sat 31-Aug-13 22:39:00

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

That website looks total BOLLOCKS to me!

ajmc67 Sat 31-Aug-13 23:43:33

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 Sun 01-Sep-13 12:25:41

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?

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