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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

AIBU to worry about the surge in school-suggested ASD diagnoses?

280 replies

cremebrulait · 27/07/2024 13:10

Fellow mums, I'm worried about a trend I've noticed in our schools. It seems some are pushing parents to seek ASD diagnoses to secure funding for support. While I absolutely believe children with autism deserve all the help they can get, I'm concerned about the following:

  1. The high rate of suggested ASD diagnoses in some classes (much higher than average)
  2. Schools advising parents to get diagnoses to continue enrollment
  3. Long NHS waiting times leading to private evaluations

I worry this might lead to:

  • Misallocation of resources
  • Inappropriate interventions for children
  • Overlooking other potential issues
  • Psychological impact on misdiagnosed children

Shouldn't there be equality in support for children with other learning or developmental issues too? Like ADHD, emotional and behavioural disorders, sensory impairments, physical disabilities, intellectual disabilities, developmental delays, health conditions, sensory processing disorder, specific learning differences, or twice-exceptional children?

AIBU to think this system is flawed? Has anyone else experienced this? Am I overreacting, or is this a genuine concern? What are your thoughts on how we can ensure all children get the right support without resorting to potentially inaccurate diagnoses?

(I'll post more thoughts on misdiagnosis in comments.)

OP posts:
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Yerroblemom1923 · 29/07/2024 08:51

Oh don't get me started on this! A friend is hellbent on trying to get all her kids diagnosed with something - I'm. Concerned there is some kind of Munchausen by proxy disorder going on in some parents' minds and they seek attention by going down this avenue. It's v worrying what is happening to some really nt kids!

Yerroblemom1923 · 29/07/2024 10:19

@BehindTheSequinsandStilettos but the facial disformities only present if the mother had been drinking excessively during a certain point in the foetal development so not all FASD are so obvious.
Also some mothers may not know they're pregnant until later on when the damage has been done.
Few mothers are going to admit to drinking during pregnancy. This needs a closer look at as it's a bigger issue than people realise.

Yerroblemom1923 · 29/07/2024 10:20

*deformities

BeatenbySassafras · 29/07/2024 10:38

I think you make a very reasonable point. There is a of anchoring and attributional bias on Mumsnet when it comes to ASD and ADHD diagnosis. It isnt sustainable. Would be interesting to see diagnosis rates in other European countries - I suspect this is very much an Anglosphere phenomenon.

Yerroblemom1923 · 29/07/2024 10:41

@BeatenbySassafras I think it may be more of a Mumsnet phenomenon.

saturnspinkhoop · 29/07/2024 10:42

AutismProf · 29/07/2024 08:07

You really should have been :)

To be honest, there was a lot that was lacking in my dc’s assessment. The diagnosis was correct, but then it was very obvious!

NowImNotDoingIt · 29/07/2024 11:04

@BeatenbySassafras

France
France has consistently reported one of the lowest rates of autism among developed countries in Europe. With a rate of 69.3 per 10,000 people or 1 in 144 people, France stands out for its relatively lower prevalence of autism. This means that approximately 69 individuals out of every 10,000 in France are diagnosed with autism.
Portugal
Following closely behind France, Portugal also reports a low rate of autism. Approximately 70.5 individuals out of every 10,000 in Portugal are diagnosed with autism, resulting in a ratio of 1 in 142 people. The relatively low prevalence of autism in Portugal contributes to our understanding of global autism statistics.
Iceland, Norway, Italy, Germany, and Greece
These countries share similar rates of autism, with approximately 72 individuals diagnosed per 10,000 people. This translates to a ratio of 1 in 139 people. Iceland, Norway, Italy, Germany, and Greece all fall within this range, showcasing the comparable prevalence of autism within these nations.
Austria, Belgium, and Spain
Austria, Belgium, and Spain have slightly higher rates compared to the other countries with low autism rates. Reports indicate that approximately 73 individuals out of every 10,000 in these countries are diagnosed with autism. This equates to a ratio of 1 in 137 people. While these rates are marginally higher, they still fall within the range of countries with relatively low autism prevalence.

There you go.

NowImNotDoingIt · 29/07/2024 11:06

• South Korea: 1 in 38 children
• United States: 1 in 36 children
• Japan: 1 in 87 children
• Sweden: 1 in 100 children
• Denmark: 1 in 60 children
• Australia: 1 in 70 children
• Canada: 1 in 66 children
• Norway: 1 in 59 children
• Belgium: 1 in 134 children
• Finland: 1 in 86 children
• France: 1 in 100 children
• Germany: 1 in 160 children
• Italy: 1 in 166 children
• Netherlands: 1 in 82 children
• Spain: 1 in 100 children
• Switzerland: 1 in 77 children
• UK: 1 in 64 children
• China: 1 in 160 children
• India: 1 in 500 children

South Korea doesn't strike me as an Anglophone country.

BonifaceBonanza · 29/07/2024 11:14

I don’t see how you are being able to distinguish between rate of diagnosis and rate of prevalence.

Are you suggesting that these figures reflect prevalence, under diagnosis in some countries, or over diagnosis in some countries?

AutismProf · 29/07/2024 11:41

France is well known as having had until very recently a very problematic view of autism with dubious therapeutic "approaches" based in psychoanalysis. I would certainly have tried to avoid my now 23 year old son being diagnosed in childhood there.

https://www.theguardian.com/world/2018/apr/06/france-to-unveil-340m-plan-to-improve-rights-of-people-with-autism

FuzzyStripes · 29/07/2024 11:48

I don’t think it is normal for a school to come out and say that they think a child is neurodivergent. They might make gentle suggestions of neurodivergent behaviours but it’s not their place to diagnose or do anything other than support an assessment.

An assessment is often something that takes a long time and that’s not the waiting time. The referral needs to provide enough evidence for the child to be accepted for an assessment. Teachers and parents need to complete questionnaires which can take hours, information is taken from educational psychologists etc and then the full assessment is carried out. Sometimes it’s a multidisciplinary team. The diagnosis won’t be given if the qualified educational and medical experts concerned aren’t confident that the child meets the criteria needed; they couldn’t care less whether the school financially benefits or not and quite often the child is at a totally different school by this point anyway because it all takes so long.

Noras · 29/07/2024 11:53

People forget that during Covid the NHS published support information on how to deal with patients. Amongst that was a determination to refuse life saving treatment for people with SEN eg ASD and/ or learning disabilities. I kept a photo shot of the various news reports as I was that shocked. I even called my GP and was told that sadly it was true and that they would get DS vaccinated ASAP. People with more considered care plans would be deemed less likely to survive with treatment for Covid etc.

As we are one virus away from this form of eugenics what sort of person would want their kid diagnosed unless they were desperate for support and help on eg schooling etc?

Noras · 29/07/2024 11:57

From the Independent

Emergency guidance to help doctors decide who should get critical care during the coronavirus outbreak is being urgently re-written after a U-turn by a national health watchdog over fears it could mean disabled people are denied treatment.
The National Institute for Health and Care Excellence (NICE) had been threatened with legal action for telling doctors they should assess patients with learning disabilities, autismand other limiting conditions as scoring high for frailty.

The idea that hordes of people would pain for a diagnosis having seen and lived through this time period is bizarre. People forget how petrifying it was for people with kids with SEN/ ASD etc

Coronavirus UK news and live updates daily | The Independent

Live Coronavirus updates and today’s latest lockdown rules across the UK

https://www.independent.co.uk/topic/coronavirus

Noras · 29/07/2024 12:05

BBC news in 2020 during Covid

A GP surgery which said autistic adults should have plans to prevent them being resuscitated if they become critically ill has been criticised.
Voyage Care, which cares for the group, was sent the letter by a surgery in Somerset amid the coronavirus crisis.
On Twitter, the firm's boss Andrew Cannon said there had been "no consultation with families" and most involved were "working age adults".
Somerset Clinical Commissioning Group (CCG) has declined to name the surgery.
It said it was investigating the matter.
The paperwork is known as a "do not resuscitate" (DNR) order or an advanced care plan.
It is sometimes used if someone is nearing the end of their life or have a complex medical condition.
The paperwork is usually drawn up by medical professionals with the co-operation of the patient in question, if they have capacity to do so, or with their family.

But sure parents can’t wait to have their kids diagnosed despite this sort of thing!

saturnspinkhoop · 29/07/2024 12:09

Noras · 29/07/2024 12:05

BBC news in 2020 during Covid

A GP surgery which said autistic adults should have plans to prevent them being resuscitated if they become critically ill has been criticised.
Voyage Care, which cares for the group, was sent the letter by a surgery in Somerset amid the coronavirus crisis.
On Twitter, the firm's boss Andrew Cannon said there had been "no consultation with families" and most involved were "working age adults".
Somerset Clinical Commissioning Group (CCG) has declined to name the surgery.
It said it was investigating the matter.
The paperwork is known as a "do not resuscitate" (DNR) order or an advanced care plan.
It is sometimes used if someone is nearing the end of their life or have a complex medical condition.
The paperwork is usually drawn up by medical professionals with the co-operation of the patient in question, if they have capacity to do so, or with their family.

But sure parents can’t wait to have their kids diagnosed despite this sort of thing!

I contacted my HV with concerns about my dc because I wanted to be told that everything was ok and that I was being an over anxious mother. My dc was eventually diagnosed with Autism at the age of 2.

Noras · 29/07/2024 12:14

People whose kids were clearly ASD and well known to support services during these times were full of dread about Covid.They were also scared by the little social media reminders eg ‘ have you filled in a care plan for your loved one yet just in case…’

So to suggest that there are hordes of people wanting their kids to be ‘autistic’ despite what happened only four years ago is perverse! People must have very short memories. To be ASD 4 years ago was a potential death sentence.

kittensinthekitchen · 29/07/2024 12:39

BeatenbySassafras · 29/07/2024 10:38

I think you make a very reasonable point. There is a of anchoring and attributional bias on Mumsnet when it comes to ASD and ADHD diagnosis. It isnt sustainable. Would be interesting to see diagnosis rates in other European countries - I suspect this is very much an Anglosphere phenomenon.

The UK has a high rate of cancer diagnosis. It isn't sustainable.
I say we need to stop diagnosing and treating so many people with cancer.

Yerroblemom1923 · 29/07/2024 12:41

I'm not one for conspiracy theories but the whole Covid thing sounds like some mass cull! Like if we DNR them all the asd figures will shrink!!!!

Yerroblemom1923 · 29/07/2024 12:43

@kittensinthekitchen yes, but people die of cancer and can be saved. Asd is something that the victims have to live with. I'm sure it's not comfortable but they're are adaptations schools and workplaces make for them.

kittensinthekitchen · 29/07/2024 12:58

Yerroblemom1923 · 29/07/2024 12:43

@kittensinthekitchen yes, but people die of cancer and can be saved. Asd is something that the victims have to live with. I'm sure it's not comfortable but they're are adaptations schools and workplaces make for them.

Workplaces and classrooms very, very rarely make adaptions (or maybe think of it more as legally-obligated accommodations) for people with ASD without diagnosis.

BeatenbySassafras · 29/07/2024 13:01

kittensinthekitchen · 29/07/2024 12:39

The UK has a high rate of cancer diagnosis. It isn't sustainable.
I say we need to stop diagnosing and treating so many people with cancer.

Overdiagnosis and overtreatment of certain cancers is certainly a problem, maybe not so much in the UK. There is ongoing debate about the risks vs benefits of population screening. South Korea famously had a huge problem with thyroid cancer overdiagnosis that led to considerable patient harm.

kittensinthekitchen · 29/07/2024 13:21

BeatenbySassafras · 29/07/2024 13:01

Overdiagnosis and overtreatment of certain cancers is certainly a problem, maybe not so much in the UK. There is ongoing debate about the risks vs benefits of population screening. South Korea famously had a huge problem with thyroid cancer overdiagnosis that led to considerable patient harm.

That's shocking. Are these people just pushing for cancer diagnosis for money? For drugs? Are their loved ones for it to excuse some of their symptoms?

What should we do? From now on, I'm going to doubt and question everyone I know who says they have cancer.

MarthaJonesPhone · 29/07/2024 13:38

@Yerroblemom1923

No they really don't make adaptations.

Instead of uncomfortable try unbearable!

Noras · 29/07/2024 16:06

Well this was France 5 years ago - source Guardian. This might explain things ..

Like thousands of French children whose parents believe they have autism, Rachel’s six-year-old son had been placed by the state in a psychiatric hospital day unit. The team there, of the school of post-Freudian psychoanalysis, did not give a clear-cut diagnosis.
Rachel, who lived in a small village outside the alpine city of Grenoble, said she would go elsewhere to assess all three of her children. But the hospital called social services, who threatened to take the children away from her.
A consultant psychiatrist said Rachel was fabricating her children’s symptoms for attention, that they were not autistic, and that she wanted them to have autism spectrum disorder in order to make herself look more interesting.
Rachel’s children were taken and placed in care homes.
The children were subsequently diagnosed with autism and other issues, proving Rachel right. But despite a high-profile court battle in which parents’ groups denounced the “prehistoric vision of autism in France”, Rachel, who herself has Asperger syndrome, has still not won back custody of her children two years later. They remain in care with limited visiting rights. Local authorities insist the decision was correct.
If I hadn’t have done this on my own, I think he would be in an adult psychiatric hospital, tied up, on medication
“I’m condemned to stand by powerless at the loss of my family,” she wrote after their latest visit to her at Christmas, fearing her children had regressed in care. “I’m destroyed, my children are destroyed.”
The “Rachel affair”, entering another courtroom appeal battle this summer, has become a symbol of what parents’ groups call the “state scandal” of the treatment of autistic children in France. The crisis is so acute that the centrist French president Emmanuel Macron has deemed it an urgent “civilisational challenge”, promising a new autism action plan to be announced within weeks.
The United Nations stated in its most recent report that autistic children in France “continue to be subjected to widespread violations of their rights”. The French state has been forced to pay hundreds of thousands of euros in damages to families for inadequate care of autistic children in recent years.
The UN found that the majority of children with autism do not have access to mainstream education and many “are still offered inefficient psychoanalytical therapies, overmedication and placement in psychiatric hospitals and institutions”. Parents who oppose the institutionalisation of their children “are intimidated and threatened and, in some cases, lose custody of their children”.
Autism associations in France complain that autistic adults are shut away in hospitals, children face a lack of diagnosis and there is a persistence with a post-Freudian psychoanalytic approach that focuses not on education but on the autistic child’s unconscious feelings towards the mother.
A 2005 law guarantees every child the right to education in a mainstream school, but the Council of Europe has condemned France for not respecting it. Pressure groups estimate that only 20% of autistic children are in school, compared with 70% in England.
“France is 50 years behind on autism,” said Sophie Janois, Rachel’s lawyer. Her book, The Autists’ Cause, published this month, sets out to raise the alarm on the abuses of autistic people’s legal rights. “Parents are told: ‘Forget your child, grieve for your child and accept the fact that they will be put in an institution’.”
“Underlying this is a cultural problem in France,” Janois says. “France is the last bastion of psychoanalysis. In neighbouring countries, methods in education and behavioural therapies are the norm and psychoanalysis was abandoned a long time ago. In France, psychoanalysis continues to be applied to autistic children and taught in universities.”
She said parents were forced to fight a constant administrative battle for their children’s rights. “There are suicides of parents of autistic children … at least five in the last couple of years.”.
10 ways to help the parent of a child with autism
The row over post-Freudian psychoanalysis and autism in France has been bitter. Eighteen months ago, a group of deputies tried and failed to make parliament ban the use of psychoanalysis in the treatment of autistic children, claiming that the “outdated” view of autism as a child’s unconscious rejection of a cold, so-called “refrigerator” mother was denying children educational support.

Psychoanalysts, who have a powerful, leading role in French mental health care, criticised the campaign as “harmful” and defamatory.
In 2012, the French health authority stated that psychoanalysis was not recommended as an exclusive treatment method for autistic people because of a lack of consensus on its effectiveness. But most state hospitals still use the methods.
In addition, the United Nations warned in 2016 that a technique called “packing” – in which an autistic child is wrapped in cold, wet sheets – amounted to “ill-treatment” but had not been legally banned and was reportedly “still practised” on some children with autism. The then health minister issued a memo advising that the practice should stop.
Parents insist that excellent professionals are present in France, but they are few and in high demand, with services patchy and varying by area.
Adrien Stranieri plays dominoes with his mother, Catherine Chavy, who privately organised support for him at home. Photograph: Ed Alcock/The Guardian
“I was told by local authorities: ‘Why are you insisting on school? Put him in an institution,’” said one mother near Tours of her high-functioning autistic seven-year-old who is now doing well academically. “In France, there is an autism of the poor, and the autism of the rich. If I didn’t have money and the skill to fight, my son would have ended up in psychiatric hospital.”

Catherine Chavy’s son Adrien is 20 years old. As a small child he was treated part-time at a state psychiatric hospital that used a psychoanalytical approach. His autism went undiagnosed for years. Chavy fought for a diagnosis and entry to primary school, later finding a centre that used educational and behavioural methods, where Adrien flourished. When he reached 15, there were no provisions at all. She privately organised permanent support for him at home. “He cooks, does sport, goes to his grandma’s for lunch. He has a lovely life, going out every day. If I hadn’t have done this on my own, I think he would be in an adult psychiatric hospital, tied up, on medication,” she said. “The situation in France is a health and education scandal.”
Pascale Millo set up an association for parents of autistic children in Corsica. She has a 14-year-old son, also called Adrien, with high-functioning autism and dyspraxia. The state put him in a psychiatric hospital day unit for years, but Millo didn’t get a diagnosis until he was nine. Adrien is academically strong but she has had to fight for his right, as someone with dyspraxia, to do all schoolwork on a computer, taking on the training and support herself, never sure whether, from one month to the next, lack of support in the education system will mean his studies are cut short. “In theory, France has everything: state finances, and laws to protect us,” she said. “But those laws are not being respected.”

Vincent Dennery, who heads a collective of autism associations, said he hoped for concrete, practical measures in Macron’s autism action plan, and a move from a medicalised approach towards education. “There are still thousands of autistic children in psychiatric hospital day units who have no reason to be there, but their parents can’t find any other solution,” he said.
Dennery said he felt society needed to shift. “Culturally, French society has been a place of exclusion. A large number of societies deinstitutionalised disability or difference and moved to include people in ordinary life, but France has not.”
• The bottom picture caption was amended on 14 February 2018 to correct Adrien Stranieri’s last name from Straniero.

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cremebrulait · 29/07/2024 18:15

BonifaceBonanza · 28/07/2024 06:21

@cremebrulait
Do you understand that schools dont get “additional needs” funding based on or because of a diagnosis?
Every child in a class could have a diagnosis and there would be no extra money.

Do you understand that certainly in the UK, pursuing a possible diagnosis for ASD certainly does not mean you will get one?

Why are you not far more concerned about the cause of the generational rise in cases of ASD (over and above any rise due to increased recognition or awareness)?

I understand all of that. But it doesn’t explain explain the pressure parents are getting put under.

i am concerned about generational issues. In part of my family I am not blood related to - there seems to be a history. In my own bloodline there is a history of immaculate disgnised - meaning they change with age. I am concerned red about the way DSM-5 is written so broadly. I’m concerned by people getting different diagnoses for the same child. I’m concerned about A LOT of things. I wouldn’t assume I’m more concerned about one issue or another. I am trying to understand different angles of this topic. And how to make things better. And while many like you have questioned me, if you look through the comments many people including a paediatric professional have commented that they have had a similar experience and many people have thanked me for the comment.

i know almost anything SEN related is an emotive topic but I do find it interesting how some people have been unkind toward me, accused me of making up BS, and a few accuse me of being a troll. But still there are the many who have had similar experience.I’m more surprised by the lack of empathy.

OP posts: