Have we gone too far with diagnoses of autism?

[SpinachIsLush]

I know this is a sensitive topic, and I'm sorry if it upsets anyone.

I was listening to a child psychiatrist yesterday arguing very convincingly that we've gone way too far in labelling what are essentially normal (albeit not universal, and sometimes difficult) human traits.

Have we gone too far in "diagnosing neurodiversity" so often? Is it actually because the world is increasingly difficult for young people to navigate, which is making more and more appear to fall outside "normal"?

I’m 32, I was told by my psychiatrist in August that I’m ‘probably autistic’. It was first suggested a few years ago and I was told that as I do have a pre existing diagnosis of dyspraxia, I am neurodivergent.

I was bullied horrendously at school. I used to have to hide behind a wall at lunch because I would get stuff thrown at me. They sang songs about me. One that started with my name. That was 20 years ago and I still hear that song now if someone says my name. I’ve never coped well with friendships. I’ve never had a romantic or intimate relationship. I don’t understand a lot of social nuances. Sarcasm and jokes and stuff, group work, staff room politics - all beyond me. I can’t always tell if someone likes me or not. I don’t always understand facial expressions.

In primary school I excelled in reading and writing but put me in a PE hall or a group task and I was lost. I was shouted for not being socially able.

I eat the same stuff again and again because it feels safe, I get a lot of enjoyment from sensory stuff but I also have sensory overload and difficulties with proprioception and balance.

Over time I have learnt and taught myself, and I can get by reasonably well, but it’s exhausting to the point of illness as I spend a huge amount of time masking. I’m also heavily medicated for anxiety and low mood.

Being told that I’m neurodivergent and being taught about it, has been a huge relief. I’m able to play to my strengths and understand my weaknesses and needs.

I work in a role where I can help others do the same.

But I should not have had to wait until I was 32 to get told ‘probably’ - even after the ‘probably’, I was told the NHS would hugely reluctant to diagnose.

My younger sister, 30, was 12 when she was diagnosed - she’s left school with zero qualifications because they used to make her sit in the corridor. She’s again taught herself a lot but needs 24 hour support.

I remember many children throughout school who were I would say neurodivergent. One’s dead, one’s in jail.

Years ago your autistic adult would have just been ignored or shut away. Met many people in my job who’ve spent years in institutional care due to lack of understanding 40+ years ago.

I don’t think we are over-diagnosing, I think autism is as prevalent as it has ever been but we are now helping other people understand how their brains work and helping society adapt to their needs and ways of thinking. That can only be a good thing.

Good points @Thehonestbadger.

@bloodyhatemybody I'm sorry you've had such a hard time, and am glad you've found the concept of neurodivergence helpful.

@Tryingtohelp12 yes, I've had some similar experiences. It's partly what made me start looking at alternative perspectives.

I do actually agree with you on that one. I think sometimes that’s where keeping the term Aspergers would have helped - eg some of the adults I work with who are autistic are reliant on high tech AAC and smear, etc - there’s a huge difference between me and them. Terminology I would use at work would be autism with associated intellectual disability/learning disability or PMLD (profound and multiple learning disabilities). I think the trouble is there’s no clear terminology or distinction made. I don’t know how best that could be addressed. I tend to try and think of it as being on a spectrum but then we’re taught not to say high/low functioning or severe. Sister refers to herself as having ‘classic autism’ but I’ve no idea where she got that term from.

Thanks 🩷 I should say my username refers to hating my uterus 🤣, which is causing me no end of problems and was the subject of a different thread yesterday - I just forgot to change my username!

Asd no probably not far enough.
But dyslexia maybe too far. Kids are being diagnosed even though say getting well into exceeding at ks2 sats. So its no longer causing an issue. It is being diagnosed when a child struggles learning but isnt removed when they catch up. Meaning they continue to get extra time etc.
For asd the wait lists are too long it should be at absolute max 6m.
-It can have a big impact without the child having no speech etc. Eg no friendships leads to bullying.
-Depression and dropping out. Anxiety.
We need to know if dd has asd because

• We have another dd with traits
• To encourage any school adjustments

To prevent teachers picking on dd (min 2) To prevent exclusion from out of school activities Could have had cheaper 1-2-1 swimming lessons. Needed because she struggles with instructions. Other kid i know wouldnt go at all. Adjustments for pe Understanding when queuing is tricky High risk of teen pregnancy Stopping disrimination stopping her going on residentials

• To find out if it is asd or adhd as adhd could be helped with meds

At 11 she is talking of killing herself It affects getting ehcp or adjustments I expect she is high risk for anorexia. As food getting more restricted If she is bullied she might hit back For medical treatment she might have to be held down (flu spray etc) We could divert her away from jobs working in teams or customer service etc if needed. It is also important to know about asd or adhd as some families may want to know as planning more kids. If say asd inheritance meant sibling was 25% likely to have it them its important to know. That also refects i to dd having kids. In fact i would almost say that alone is worth the cost of diagnosis Dd does well academically but works slowly. She really frustrates teachers.

Have you asked if there are any physical conditions we've gone too far in diagnosing?

I mean, why don't you ask about Asthma, i mean.. so many people needing inhlaers to breathe, aren't we just pathologising normal lung problems?

What about hearing loss.. i mean, do we need a diagnosis? Why is all this money being spent on hearing aids?

Eyes... thats natural, i mean everyones eyesight fails eventually..

why are we wasting NHS money on anyones physical disabilities. I'll go give my cane back.. i mean, my spine is rotting, but its normal, right? just pathologizing normal pain of aging, who needs to label it?

Shut up. ffs.

My ds is profoundly/ severly/ low functioning (take your pic of term). I think the merging of aspergers into the autism dx was a mistake and I'm glad there is talk of separating the dx again with profound autism being used to distinguish. I hope this goes into the dsm quickly.

I think the term autism encompasses too many different presentations and that rather than it be an umbrella dx should be better quantified.

I dislike the nerodiversity movement as it excludes people like my son, I also dislike the "difference rather than dx" brigade and the "your son must have ld as a co-morbid" brigade - no he has severe autism.

The changing definition of what is autism to include people who would have never previously had a dx is damaging to those with profound needs as they are nothing like their version of autism. I've seen some sm posts those with the less severe/ profound/ hf autism don't like the inclusion of the "other" type of autism because it shows it to be a disability and they don't class themselves as disabled. (I know this isn't everyone, just some).

Yes, I was being sarcastic, no offense meant to diabetics. I purposely picked a physical illness that can have terrible consequences, because autism can also have terrible unseen consequences.

As an autistic mother of an autistic child I'm so sick of people being able to question the validity of our disabilities. It's not okay for other conditions, so why autism.

People asking 'where the line is'

The line is where it becomes a disability, which is where the line for diagnosis is.

That being where it severely impacts someone ability to function in 3 separate areas.

If you haven't been through the process of diagnosis, keep your stupid uneducated opinions to yourself.

you cant GET a diagnosis unless it severely impacts your ability to function.

I dont think it helps that the term 'autism' encompasses so many things. They say that if you have met one person with autism, you have met one person with autism and that is true. However the public perception of autism tends to be the Rainman/Sheldon steroetype that may be easier to identify with than those who also have LD, or who are non-verbal.

Having said that, there are many times that I have felt 'lucky' that my son has what used to be classed as 'severe' autism, because there is no nuance, no shades of grey. I have met families who have struggled so hard to get a diagnosis, its taken years of fighting, and the toll on the whole family is devastating.

@SpinachIsLush

I think it's an interesting question.

Watching the video I am not convinced by the logic of his argument. Seems to be

1. autism doesn't appear to be genetic except for people with intellectual disabilities

2. nobody has a good theory as to what autism is caused by

3. the diagnosis is not 'clinically useful' because non autistic people can also benefit from autism intervention resources

Therefore 4) autism doesn't exist. Seems like a bit of a leap?

Cubic
I think sometimes voices and experiences like yours get lost in the current neurodiversity and autism discussion.

My concern from seeing services being eroded is that it's increasingly difficult for anyone to be seen, but in the explosion of discussion those who are more profoundly affected seem to be pushed to the fringes.

It’s exceptionally difficult for eg NHS - the team I work for will only take adults with an IQ of 70 or less, but that means that adults who have a higher IQ but low social/day to day functioning (eg your son) are being excluded from services - I’m assuming he couldn’t access eg mainstream services (eg speech therapy, OT, physio). Whereas if LD specific services were less strict in criteria, more people could get the benefit … but they’d probably be overwhelmed very quickly by demand. Already the only people being seen are those in crisis or those that shout the loudest.

You’ve also got the issue that on the other side some people can’t get access to cahms etc because of a diagnosis…

It is helpful for people to be taught how their brain works but I wonder if - I’m just thinking out loud now - if that needs to be labelled in people who are higher functioning - I realise I’m slightly contradicting myself now but I wonder if there’s an argument for accepting that a) some people’s brains work differently and they might have some traits and things in common with each other, but b) keeping autism as a diagnosis for people in whom it severely impacts on functioning … BUT then you have the issue of people who have higher functioning using autism as a way of social networking and finding their tribe so to speak, accessing some services and reasonable adjustments at work/benefits etc…

Goodness knows. I could write all day about this.

"keeping autism as a diagnosis for people in whom it severely impacts on functioning … BUT then you have the issue of people who have higher functioning using autism as a way of social networking and finding their tribe so to speak, accessing some services and reasonable adjustments at work/benefits etc…"

Just because someone talks doesn't mean they can't severe difficulties with functioning. I got diagnosed because I was struggling to function.

I sincerely hope you aren't a professional who will ever be involved in my own child's care with your views.

@bloodyhatemybody he has a very well written ehcp with qualifications required by ot and slt so he does recieve these services but they are specialist in certain areas (sensory ot pg, high tech aac slt) via budgets but yes when he leaves education or we lose at tribunal for the provision I do wonder what will happen.

I think the 'profound' quantifier may help in the social group scenario you detailed as it separates the diagnosis to show the difference.

I think a big draw back for those who wouldn't be in the profound dx is lack of services, I'm aware that one of the reasons the aspergers dx was included was so people with these needs were taken more seriously and given access to some services they could previously.

I think camhs is vastly underfunded and I'm aware that in our area children/ yp who have attempted suicide aren't always supported beyond an initial contact so those who suffer with anxiety, social issues (not dealt with by slt) etc are far down the list of priorities and rarely make it further up than the universal offer.

I think all related services are vastly underfunded and from my perspective the emphasis does generally go to those with children who are h f. Social care activities especially, locally even to the point families with children with physical needs feel left out short break provision as it's aimed at those with social/ comms needs but not so much they require 1:1 or 2:1 support.

I suppose it depends what question is being asked.

Is it 'why are so many conditions that appear very different from each other, all lumped under the name of autism'?

I think this is possibly what the guy in the video is getting at?

Or is it 'are we as a society much too ready to jump in and diagnose things, rather than just accepting that people are different'?

My ds now 16 has autism and global developmental delay, he will never live independently. He was diagnosed at 3 and has been in a special school since then. My DH was diagnosed with ASD at 49.........he has struggled for years and his childhood was miserable, he was bullied in school and his parents were very unsupportive of him. Since the diagnosis, he has been able to access some support that has been very helpful to him and his employer is supportive and small adjustments have been made that have made a huge difference to him.
I really wish he had been able to get support years before. He is still the same person and will always be quirky but now he knows why he doesn't always see things the same way as others.

@Aria999 yes, I think there are lots of questions here. Are we giving medical/psychiatric/psychological labels to some aspects of common human experiences, when this is not helpful/scientifically invalid/gets us out of actually making the world easier for people with diverse characteristics to thrive in? Are too many people being lumped into the same category?

My DS is one of those who appears functional, he can talk, he's intelligent, he can probably have a reasonable discussion with you so long as you're not challenging him and asking about something he likes talking about.

However, he is so impaired that he needs 24hr supervision and is unlikely to ever live independently or get/keep a job.

Diagnoses, and the numbers and types of people meeting criteria for diagnoses, evolve all the time (especially in psychiatry/psychology, but also in medicine more broadly, right?). Each version of the DSM leads to changes in how people and problems are classified (and every one is just written by a committee of infallible - and often partial - people). Why would we NOT want to be questioning about whether we're currently getting things right?

Haha - fallible - not infallible!

Are we giving medical/psychiatric/psychological labels to some aspects of common human experiences, when this is not helpful/scientifically invalid/gets us out of actually making the world easier for people with diverse characteristics to thrive in?

My gut feeling on this is probably yes , but it may be better than the alternative. If we stop using the diagnostic framework to identify people who can really benefit from certain types of intervention then in reality all that's likely to happen is people will miss out on help who need it.

I do get concerned when it leads to medical interventions though (as opposed to CBT etc).

DS has a diagnosis of ODD which so far is getting him a weekly therapy session and some extra support in school. I am very grateful for it but I do struggle to see how it's really a condition as opposed to just who he is.