The UK's NHS's Selective Manner of Autism Diagnosis

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Some diagnosticians appeared to me to have a poor understanding of clinical diagnostic criteria in any case. I lost count of the times I heard them say "he/she cant be Autistic because they made eye contact, have some friends etc".

In my opinion the clinical diagnostic process is very much part of the 'business of Autism' and the neurotypical folk that make up most of the staff teams in these services have a vested interest in being valued as 'gatekeepers' and maintaining the power imbalance that exist between them and Autistic people.

I have found that private diagnostic assessment in the UK is more nuanced and reliable.

But OCD is like, I want to stop, but I can't.

I'm not sure when it really started to change, but back in the '90s I got an OCD diagnosis that effectively blocked getting an ADHD diagnosis which has partially blocked me from getting a proper ASD diagnosis. The fact that there were various schizophrenia spectrum diagnoses in there as well hasn't helped.

I think the whole situation is tragically comical as there seems to be far more concern with people gaming the system by knowing their autistic than addressing the massive misdiagnosis problem that includes folks that didn't get the ASD diagnosis that they should have been being treated with antipsychotics and other inappropriate medications for years, when therapy and adjustments to the environment around them might be more appropriate and not necessarily very expensive.

No, medications are easy to prescribe and the drug companies get paid.

Therapists are expensive.

One could say I am high functioning as I have a higher than average I.Q.

What I will say is that for me, I became desparate due to the situation I was in.

I have noticed I get lost in details... I started looking for a tool today and I ended up being sidetracked and spent a few hours on something else. When I was tired out and ready to pack in, I remembered I was looking for the tool! It will wait for tomorrow or another day!

Thousands of children are on "hidden" waiting lists for autism and ADHD assessments, experts have told the BBC.

This is despite the Scottish government hitting its waiting times target for young people's mental health services for the first time last month.

The Royal College of Psychiatrists (RCPsych) in Scotland said the number of children on separate lists waiting to be assessed for neurodevelopmental conditions is not routinely published and the Scottish government needs to be more transparent.

Child and Adolescent Mental Health Services (CAMHS) aims to help children with mental health problems which are causing a significant impact on their day-to-day lives, such as anxiety, depression, self-harm and eating disorders.

Last month, the latest official figures showed that 90% of young people had started treatment within 18 weeks of referral to CAMHS.

This was the first time the target had been reached since it was set more than a decade ago.
However, Dr Laura Sutherland, who is the vice chair of the RCPsych in Scotland child & adolescent faculty, said children who are the most at risk are prioritised which can result in people with a neurodevelopmental condition waiting longer.

"Often there is not an immediate risk which is why some of these young people can wait for longer but I think overall the impact is longer term," she said.

"It means young people can't get into education or be supported adequately and ultimately some of these young people will go on to develop mental health conditions on the back of neurodiverse conditions."

BBC Scotland News submitted Freedom of Information requests last year to try to gain an insight into the scale of waiting lists for young people looking for help with neurodevelopmental conditions.

NHS Greater Glasgow and Clyde said 7,560 children were waiting for a first appointment as of last spring, while for NHS Lothian the figure was 6,192 and for NHS Lanarkshire it was 8,571.

NHS Highland said 1,537 children were waiting for a neurodevelopmental assessment there.

However, not all health boards collect this data in the same way and it is not consistently published.

Dr Sutherland, who is also a consultant psychiatrist for CAMHS in Tayside, told the BBC the Scottish government should be more transparent about these "hidden waits".

She said there should be ring-fenced funding for neurodevelopmental pathways to support vulnerable young people.

There are a number of routes for children to get a neurodevelopmental assessment.
The most common are for autism and ADHD.

Some children may be referred to paediatrics but many will initially go through CAMHS then be put on a neurodevelopmental waiting list.

It is the same specialist healthcare staff working with CAMHS, including psychiatrists, who carry out neurodevelopmental assessments and give diagnoses.

So there is competition for the resources which are already short-staffed.

There has been an increase in demand across the country in recent years.

In March, NHS Tayside stopped all new referrals for ADHD and autism to CAMHS due to increase demand for assessments.

Suzi Martin, from the National Autistic Society Scotland, said she was very concerned at the withdrawal of autism assessment services in some areas.

"Not only is diagnosis a validating and life-affirming experience for many, but families tell us that it can be extremely challenging, if not impossible, to get support without one," she said.

Ms Martin said the society had been calling for more transparency on autism assessment waiting times for years and said they should be published, like they are in England.

The Salvesen Mindroom Centre, a charity that works with young people in Scotland who are neurodivergent, has seen a 295% increase in the number of people it supported last year compared to 2020.

Alan Thornburrow, the chief executive officer, said: "We can't possibly respond to the levels of demand that are out there, it's just impossible to service."

He said there has been a huge increase in the prevalence in anxiety in the young people they support.

Rosie, 16, was referred to CAMHS when she was eight.

She was living with her grandparents who helped her get mental health support and she had her first appointment after waiting a year.

It took five years before she was diagnosed with autism.

"Getting that confirmation, it was quite emotional and I cried," Rosie said.

"Then in the weeks following it just gave me a better understanding of myself."

Rosie, who also has foetal alcohol spectrum disorder, said having an NHS autism diagnosis opened up access to a lot of support.

During Covid lockdowns she struggled with her mental health, she became anxious when she left the house and stopped going to school.

She continued sessions with CAMHS but found there were long waits between appointments.
Through more regular one-to-one sessions with a support worker from Salvesen Mindroom Centre, Rosie said she worked on her anxiety and confidence and has returned to education this year.

Rising demand
There are a wide range of forms of neurodivergence including autism, dyslexia, dyspraxia, Tourette Syndrome or ADHD which can impact many aspects of life in different ways.

ADHD is characterised by difficulties with impulsivity, maintaining attention and restlessness while autism is associated with social communication difficulties, focused interests and repetitive behaviours.

Dr Sutherland said it is a positive step that children are being seen within the CAMHS target timeframe but warns that there can still be long waits for further treatment or between sessions because of staff shortages and rising demand.

"We are short of about 500 staff of all types - psychiatrists, psychologists, nursing staff - so it is very difficult to meet these targets," she said.

The RCPsych said that referrals to CAMHS had gone up 3% in the past year, with a 500% increase in those referred for eating disorders.

Children's Minister Maree Todd told BBC Radio's Good Morning Scotland: "Let me be absolutely clear that long waits for neurodevelopmental support are unacceptable."

She said it was vital children received support they they need it and that it "must not be dependent on diagnosis".

The minister said: "We do need to work more on ensuring that high standards of access to care are available in every part of the country."

Todd said the government had "really substantially" increased funding for mental health services but there was more work to do.

Hello MatchboxVagabond!



Oh absolutely! Hence the C for Compulsive. And yet, so many people, including the professionals, don't seem to understand about the compulsivity:

"But can't you just not do that?! I don't see why not ..."

"Because you don't feel what I feel! You can't see feelings!"

Precontemplative.

Certainly complete by 2012. I recall somone from hospital who was diagnosed with Bipolar, and he told me that he had come to believe that once one had a diagnosis, it will be the sole primary diagnosis and it will never be changed, no matter what happens next. The term "confirmation bias" comes to mind.

Later we were talking to another in the hospital, also with a bipolar diagnosis, and we asked him how that came about. He told us that he had seen Hitler as a grey-haired old man walk out of a shop in front of him. He told everyone about this, and got sectioned. Bipolar Disorder was diagnosed. We thought that was mad, as it was clearly a psychotic episode, which is nothing to do with Bipolar Disorder. I doubt he got the diagnosis changed.

More than 28,000 children are on waiting lists for autism and ADHD assessments with some left over four years without an appointment.

Parents have told of the “emotional devastation” at not being able to get the help they desperately need for the neurodiverse conditions because services are unable to cope with demand.

Daniel Johnson MSP has said families are being “gaslit on an epic scale” by the Scottish Government in response to the shocking findings of our investigation and called the crisis a “national scandal”.

Figures we obtained from Scottish health boards through freedom of information revealed that as of September at least 28,487 children were on NHS waiting lists desperately seeking preliminary investigations for autism and ADHD.

The staggering figure represents an increase of 4489 on the previous year despite the fact neurodivergent people are more likely to encounter worsening physical and mental health issues if left without treatment and support.

Many desperate parents we spoke to told how they have been forced to seek diagnosis and treatment privately - but at a cost of up to £5000 that is an option many families cannot afford.

Politicians, parents and charities have now demanded quicker access to vital assessments and life-changing support for children.

We asked all 14 healthboards for the number of children awaiting specifically autism and ADHD assessments.

Only eight could provide figures meaning the true scale of the waist list crisis will be even more catastrophic.

In the NHS Orkney area our probe found that 27 children had waited more than four years for appointments with the Autism Assessment coordination Group.

In NHS Glasgow Greater Clyde, a total of 9960 school children face a wait of up to 3.9 years - a rise of 1906 from 8054 the previous year.

In NHS Ayrshire and Arran, 2262 children are waiting up to 3.8 years while in NHS Lanarkshire, 9600 children face a 3.5 year wait.

Graeme Downie, MP for Dunfermline and Dollar, said: “These numbers are shocking. ADHD and autism waiting lists across Scotland have reached a crisis point. These statistics only confirm that.

Too often, I see parents forced to choose between waiting years for their children to get the care they need or trying to find the thousands of pounds it takes to get care privately. A cost well beyond the reach of many.

“Two weeks ago, when I challenged her on this issue, the Cabinet Secretary for Education and Skills told me that people don’t need to wait for a diagnosis to get help.

“That’s not what my constituents say. The constituents are struggling with depression, having difficulties at school and at work, exhausted with trying to be heard. Time and again, these people are being failed.

“The fact that it was so hard to get hold of these statistics speaks volumes.”

Dorry McLaughlin, CEO of Scottish Autism, added: “These figures set out the stark situation facing many families in Scotland.

“This is why we are calling for Scotland’s politicians to commit to a National Neurodevelopmental Pathway Guarantee, so that people who need an assessment can access one and are able to access high quality support at every stage of their journey.”

Previously we told how Charmaine Lacock’s 11-year old daughter Sarah has waited three years for an autism assessment with NHS Greater Glasgow and Clyde (NHSGGC) only to be told funding for the specialists assessments has been cut by the government.

An NHSGGC spokesperson said: “All our staff are doing all they can in challenging circumstances, prioritising those with the highest clinical need.”

The Neurodevelopmental Service for Children & Young People is overseen by University Health & Social Care North Lanarkshire (UHSCNL).

Claire Rae, UHSCNL Chief Officer, said: “We are looking at ways to reduce waiting times and also how we can empower families to address the needs of the child awaiting assessment.

“The neurodevelopmental service has created a number of workshops for parents that cover the most challenging situations parents and carers face, including sleep, diet, communication and sensory needs.

A spokesperson for Orkney Health and Care said: “We continue to keep our waiting lists under review and on average the majority of our children are seen within 2 years for an ADHD assessment but longer for autism. Significant work is taking place in Orkney to tackle these waiting lists.”

A Scottish Government spokesperson said:“We are taking action to improve support for children and young people with neurodevelopmental needs.

"We are investing an additional £500,000 this year to improve access to support for children, young people and families and, together with COSLA, we have set up a new Children and Young People’s Neurodevelopment Taskforce to drive real improvements.”

Last week many ADHD services in England announced they were closing their doors to new NHS patients due to overwhelming demand.