Autism Undiagnosed

[Sally44]

I found this on the BBC website this morning. That is suggesting quite a high number of addtional children with a recognised SEN who are on the spectrum but who have remained undiagnosed eventhough they have gone through the SEN process.

 

 

Many autism cases 'undiagnosed'

 

There may be many children with undiagnosed autism

A significant number of children with autism and related disorders could be undiagnosed, a study has suggested.

 

A Cambridge University team looked at existing diagnoses - and carried out recognised tests to assess other children.

 

Of the 20,000 studied, 1% had an autistic spectrum disorder, 12 times higher than the rate 30 years ago.

 

Autism experts said it was crucial to have accurate data on how many children were affected by the disorder.

 

 

This is important research, which for the first time gives us an estimate of the number of people who don't have an autism diagnosis but may be in need of support

 

Mark Lever, National Autistic Society

The research, published in the British Journal of Psychiatry, was carried out in three parts.

 

The scientists first looked at cases of autism and Asperger syndrome among 8,824 children on the Special Educational Needs registers in 79 schools in East Anglia.

 

A total of 83 cases were reported, giving a prevalence of 94 in 10,000, or 1 in 106 children.

 

The team then sent a diagnosis survey to parents of 11,700 children in the area.

 

From 3,373 completed surveys, 41 cases of autism-spectrum conditions were reported, corresponding to prevalence of 1 in 101.

 

This 1% rate confirms estimates from previous research.

 

They then sent the Childhood Autism Screening Test (CAST) to the same parents to help identify any undiagnosed cases of autism-spectrum conditions.

 

All those with high scores, plus some who had medium and low scores, were called in for further assessment.

 

The team found an additional 11 children who met the criteria for an autism spectrum condition, but had not yet been diagnosed.

 

Support needs

 

The researchers say that, if these findings were extrapolated to the wider population, for every three known cases of autism spectrum, there may be a further two cases that are undiagnosed.

 

Professor Baron-Cohen said: "In terms of providing services, if we want to be prepared for the maximum numbers that might come through, these undiagnosed cases might be significant.

 

"It is important to conduct epidemiological studies of autism spectrum conditions so that the relevant services, including education, health and social services, can plan adequate provision for all those children and adults who may need support."

 

Mark Lever, National Autistic Society chief executive, said: "This is important research, which for the first time gives us an estimate of the number of people who don't have an autism diagnosis but may be in need of support.

 

"Getting the right support at the right time is vitally important and access to appropriate diagnostic services is crucial."

 

He said the NAS was campaigning for statutory guidance for diagnosis included as part of the proposed Autism Bill to try and improve improvement in local authority and NHS services.

 

 

 

 

[CEJesson]

I would suggest this is quite obvious.

[smiley1590]

so many people you hear of these days either getting assessed to be officially diagnosed,officially diagnosed or still thinking it 'just them' being weird,odd stupid ,etc and no wonder why low self-esteem is carried on through years of undiagnosis or misdiagnosis it is be becoming more regular of people wanting to find themselves why they are different finding some answers othersd get accidently undiscovered while some are never found yet still questioning and searching who they are and where they belong in this of ours! they can't explain it understand it get confused and frustrated! so there still needs to MORE public awareness and information as well support and help for sufferers and their families as becasue it hidden behind we get missed and failed by society's many systems out there as they don't know how to help ,support and advice the only one i personally feel that is doing this right now doing their upmost best to this is NAS and their waiting lists are long and lengthy like so many other systems because more and more are queing to be assessed and diagnosed!

[Karen A]

Hi Sally.

Having read the information I think the undiagnosed group who were sent surveys were a random selection from the area.I do not read the information as stated suggesting that they have recognised SEN.The SEN registers are the only way of identifying children within the school system with ASD.So that is probably why SEN registers were used to assess the prevalence of ASD.

 

Elsewhere it has been reported that there are currently no recognised systems for LAs to document or record the incidence of even diagnosed ASD.Many LAs are reported to have no idea regarding how many individuals with ASD live in their area.The only documentation is SEN registers other than for more severe cases of ASD where children are assessed by Social Services as children in need.One of the drawback of the current system for assessment for ASD diagnosis is that different professionals in different areas can diagnose and there is no system for recording prevalence.

The statistics for children excluded from school with suspected ASD and SEN that have neither a diagnosis or support are I suspect very high.

I think it is most likely that the research suggests that there are probably high numbers of children with ASD who do not have a diagnosis and do not have recognised SEN.

This does not come as any surprise.

It is currently difficult to obtain an assessment for diagnosis in most areas.Whilst parents of children with ASD and HFA may be able to access an assessment via CDT things are currently complicated for parents of children witH possible AS who are not observed to have difficulties until part way through primary school.

For children in school referral to CAMHS for assessments is dependent on having a supportive GP or a supportive and aware SENCO.

Currently if school are not supportive and do not wish a child to be placed on the SEN register I believe there is an incentive not to refer a child for assessment by CAMHS.

I am certain that in my area some schools do not refer some children to CAMHS or encourage parents to obtain information.

If a parent obtains support from CAMHS for their child they may well ask school for their child to be placed on the SEN register.

They may well ask school to provide support.

If school have a limited amount of delegated funding for provision at school action and action plus they may well not want to or be able to provide support.

So there is an incentive to not encourage parents to obtain an assessment until absolutely necessary.

In my area whilst CAMHS are very good they are only involved in schools where they already have clients.Awareness of educational policy is not that high.I have spoken to CAMHS staff who thought that all children with SEN had statements of SEN.

So there appears to be currently no system for picking up children who are finding it difficult to cope in school because of ASD if school are not aware.

In my area even for children who do not have ASD CAMHS are usually involved once a child is on the verge of exclusion or in Specialist Provision which is rather late in the day to be providing early intervention.

[Karen A]

[

 

An article in the Indpendent today refers I think to the same research.

According to the article my interpretation above is wrong.The research in the Independent involved the register of SEN,a questionnaire sent to parents and a screening test given to the same parents,designed to detect children with ASD.The screening test revealed another 11 children that had not been picked up.

The results showed that when undiagnosed cases were included one in 64 children had the condition.This would suggest according to the study that there are up to 250,000 children with a condition on the ASD spectrum that are undiagnosed.Karen.

 

Edited to say.I had posted a link to the article in the Independent.Unfortunately I have removed the link myself.I realised that some of the comments posted in response to the artice were so offensive that I did not feel it appropriate to leave the link which is sad. Karen.

Edited May 29, 2009 by Karen A

[Sally44]

Although the subject itself, of undiagnosed children (or adults) with autism, is not by any means new. I was just surprised at the numbers they were talking about ie. for every 3 diagnosed a further 2 undiagnosed. That is alot of people!

And the article rightly identifies the different experiences regarding professionals and how they diagnosis from area to area.