Autism assessments: 'The system is failing our children'

Page 1 of 1 [ 2 posts ] 


User avatar

Joined: 25 Aug 2013
Age: 66
Gender: Male
Posts: 33,224
Location: Long Island, New York

04 Aug 2023, 8:52 am


With more than 150,000 people waiting for autism assessments in England, the BBC visited one Staffordshire village to speak to families affected and find out what affect it is having on their children.

Ten-year-old Ronnie is bubbly, fun-loving and obsessed with basketball.
When he was in Year One of primary school, he started to squint and make involuntary movements.

On one day, his mother Beverley said he did 19 tics in less than a minute.

He saw a psychologist who referred him for assessment in February 2022 and Ronnie had his initial assessment in January.
At it, his family were told a clinician would need to be sent out to the school to see him - but they have heard nothing more.
Without it, his mother said their application for an education, health and care plan (EHCP) to provide him with support in school was rejected due to a lack of evidence.

"I'm really worried the fact that when he goes to the high school [in September 2024] he's not going to get that support," Beverley added.

"The system at the moment is failing the children, there's not enough support out there for the children."
Ronnie and his family live in Norton Canes, a village of about 6,000 people in south Staffordshire, just off the M6 Toll.

This part of the county has more than 445 children and young people waiting for an assessment, according to the Midlands Partnership NHS Foundation Trust, which is responsible for its autism service.

Family friend Jane knows the situation with waiting times well.
She faced a long road to get a diagnosis for her 13-year-old son Jacob, which began on his first day at nursery.

"The process is so long, you're waiting weeks, months and Jacob was really struggling in mainstream school," she said.

Sarah Bamford has four children, including 10-year-old twins, both of whom needed an assessment.

Her son was given an autism working diagnosis at a young age but at four was diagnosed with epilepsy.

The family were told this meant he no longer met the criteria for an autism diagnosis.
An application by the school and the GP on behalf of her daughter was also rejected by the autism assessment service.

Fighting these decisions and facing long delays, they secured private diagnoses for both children.

While she has been able to secure an EHCP with full-time support for her son, in the case of her daughter, her private diagnosis was not accepted by the trust, who she said contacted her to say they would do their own assessment.

That was in 2022 and Mrs Bamford said she has heard nothing more.
The lack of an accepted diagnosis also meant she struggled to get an EHCP plan put in place for her daughter.

One was finally made in July after a two-year battle.

The Department of Health and Social Care published a national framework and operational guidance in April to set out how children, young people and adults can receive a timely assessment.

And a spokesperson said it had made £4.2m available in 2023 to improve services for autistic children and young people.

Demand for the Midlands Partnership University NHS Foundation Trust's autism assessment service remained high, a spokesperson said.

Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


Joined: 26 Mar 2023
Age: 43
Gender: Male
Posts: 1,035

04 Aug 2023, 9:03 am

ASPartOfMe wrote:

This is beyond unfortunate. It's not really any better in the US. The people most likely to need the evaluation are likely on public assistance, and the public health insurance has a pretty limited network of providers. I remember wanting to get back into treatment for my ADHD and being forced to go to an outpatient facility without an appointment and sit around in an extremely uncomfortable waiting room as people with more severe mental illness were making all sorts of noise and behaving erratically. I never did get any actual treatment as a result. And knowing what I know now about myself, having an ASD diagnosis should have brought with it some accommodation on that ridiculousness.

This whole thing is a large part of what I objected to with my doctor. There are rights and accommodations that only come with a diagnosis, and not having a diagnosis doesn't guarantee that those accommodations are any less life changing. And it's not even like a lot of it is even expensive. Some of it is, but a lot of it is dirt cheap.

Not that being evaluated earlier for me would have made a difference. The DSM III was far worse than the DMS IV in terms of how the disorder was defined and the treatment options.