Over diagnosis of autism in children and young people?

It's real! I do my best not to use sarcasm in a text-based medium as it can go over my head too

a braile display! 
that sounds pretty cool and advanced.... is that real or sarcasm that went over my head? if its real then tech is getting more amazing by the decade.

I access the forum either through my phone (which reads what's on the screen) or via a braille display connected to my phone (which displays what's on the screen in braille so I can read it with my fingers) 

Catlover, nice to meet you.

I have lived with ASD for 35 years, published on the subject and have worked in the field for many years.

I can tell you with confidence that there are people being diagnosed with ASD who wouldn't receive that diagnosis in a clinically robust setting.

I also agree that not all NHS services get it right. I make eye contact, work as a mental health nurse fulltime and did get the diagnosis in the NHS so I know there is exceptions. However, my own clinic didn't believe me showing the variation.

In terms of separate diagnosis comorbidity is the norm when it comes to neurodevelopmental disorders. I agree that it can become unacceptable when people are for instance diagnosed with depression and anxiety, prescribed antidepressants and told it's not a neurodevelopmental disorder. This does happen a lot with adults. I know tha many are helped by very good private clinicians in these circumstances.

When I was 6, there was a boy who lived over the road who went to my school. He was classed as disabled, and at that age, I never heard anyone say what was wrong with him. Looking back, he was clearly autistic. He had meltdowns where he lashed out, he screamed and shouted, never gave eye contact, didn’t ever mix with other children and used to be obsessed with special toys. He barely spoke. I was always fearful of him, becuase I always heard the racket from over the road. And when I was invited to a birthday party of his, I didn’t want to go. (I didn’t like partied either). My mum said not many people want to go, so I should so he doesn’t get upset.  Anyway, I ended up being with him a lot of the time, and sitting on the seesaw with him. We didn’t speak, but we just got along. I went home and told my mum that he was fine, didn’t shout, and was pleasant to play with. Now I know why! 
Thing is, I was very quiet. Called shy. I blended in, and hid well in with my peers, despite being highly stressed internally daily. No one would have ever guessed I was the same as that little boy, and I’m 50 soon.

you might aswel do it if your being paid... after all if you dont do it someone else will anyway. you may aswell take the payment as its gonna be done anyway. it cannot be stopped that kinda thing.

im not sure if it does any harm anyway, sure it may end up ignoring legit people with autism and allowing rhem to go undiagnosed while handing out diagnosis of it to people with many friends and social circles who havent lived through anything like it, but it doesnt matter anyway as its all the same to a person who has been left behind in society anyway, nothing changes, its same as what we can expect from society. in the end we realise lables and diagnosis doesnt matter, the only thing that matters is each individual life experience and what the individual has gone through.

sphynx said:

and I'm also blind

your blind? but you can see the text on the forum right?

Caelus I think you are saying what a lot of people have found to be the case. There are obviously a lot of very good private clinics and practitioners  out there. But as I have found some are not.

Like you say there can be that pressure to diagnose everybody which is what I am finding.  I am being asked to do this and refusing.

I feel.like I should do something about this but I am unsure what. I do have a voice but working out through discussion in the community what to do.

was watching a psychiatrist on youtube speak about how these autism type things come to be... he gave a valid enough argument that if you seperate  kid in their development phase from other kids they will always be left behind and never develope the social skills to fit in, and then that is where you get autism type symptoms... i think he was arguing it isnt a disease or a mental disorder but rather something of a developmental thing that is primarily the carer/guardians fault for not allowing their kid to socialise and grow in society, and once you hold your kid back from that they will always be weird, never fit in and never make it in society.

I'm not sure how much insight I have to offer with this, but here are a few initial thoughts. 

For context, I'm in my early twenties, studied an arts subject and hope to train as a therapist. I have a formal recognition of Autism, and I'm also blind. Normally i would say I'm Autistic, but given the content of your post it seems important to phrase it that way.

I absolutely agree with you that the language of the assessment is awful - very deficits-based, pathologised, and as you say arising from a non-Autistic view of what Autism is.

I have at times wondered why neuro-imaging doesn't form part of the assessment, but as a blind person the approach you describe with computer games wouldn't be accessible for me. I'm sure there would be other ways of including this, but could this contribute to making an already-pathologised process even more clinical and intrusive? I don't know what I think about this, would be curious to hear others' thoughts.

Finally, a more general and personal point: I have experienced a not insignificant degree of imposter syndrome around my Autistic identity, and I know I'm not alone in this. How would I know if I was one of those who has been wrongly identified, as you describe?

Thanks in advance for your thoughts

I never heard of someone being diagnosed with ASD if they didn’t have it. However, being diagnosed with separate or similar conditions is common practise, and this is unacceptable. 

Suggesting that private specialists give a diagnosis for ‘fun’ is unnecessary. Many people have benefited from a private diagnosis, when they were laughed out of their NHS assessments, because they coped, worked and gave eye contact! 

Its lovely to talk about this stuff.

I agree with what you are saying in relation to less obvious ASD not being diagnosed until the 1990s.

In relation to ASD and neuro.imaging this research does exist as I mention in my original post. There is a reluctance to embrace it in the field because the people trained to administer ASD assessment are not trained beyond basic neuro science and don't understand it.

For instance neurofeedback which has a fifty year history of use and data is a don't use under any circumstances approach according to NICE. There is a transcript available online where NICE debate the issue with a leading expert Stuart Black and refuse to look at any of the evidence.

If you Google Koushik Manharatna (spelling possibly wrong) eeg, ASD and Southampton University his research is available. He's not the only person to have done this work. He's one of only two people I have been involved with professionally in relation to this work.

The theory of it being multiple conditions in relation to neurology is based on an incorrect reductionist approach in looking for structural abnormalities in the brain in specific regions such as the cerebellum. There hasn't been one region found to be universally implicated in ASD. Giving rise to the multiple conditions theory.

What has been found with remarkable accuracy is the way the brain communicates internally between regions which appears to have a very specific signature. Koushik has translated brain imaging information to complex mathematical algorithms and translated this into computer programmes. If we complete six tasks ona game whilst wired this  predicts.with 90 odd percent accuracy if we have ASD. Lots of these tests exist and are fairly easy to administer.

The issue for me is we are stuck with this 'gold standard'' approach which for me has major flaws.

yeah if you go private for a diagnosis they wont tell the truth, they work on the assumption that you want to be diagnosed autistic and you will be offended if they find you arnt, they work on the basis that you are just paying for the diagnosis label and that is what you want and they are going to give you what you paid for and you will be a happy customer... .this is why i prefer official nhs diagnosis of it.. even if its harder, even if they will tell you the truth and come back negative on you and say sorry its nothing, or it could be something else.

futhurmore they understand those going private for this have first gone to the nhs and they declined them, then they got upset and refused to take it not being asd then they went private instead to chase the positive diagnosis. so they will always give you what you paid for... i bet i can be diagnosed as having rabies if i went private and told them i got upset that the nhs told me i dont have rabies...

I don't think that 'less obvious' autism was diagnosed at all until the early to mid 1990s, so there is no way I would have been diagnosed as a child. I was just regarded as being 'very shy'. Though there has been a reasonable amount of research into the genetic element of autism, it is still a 'descriptive condition', characterised by a 'bag of traits', that is very mutable. Each new iteration of diagnostic guidelines is different. It is entirely possible that autism is more than one condition, with more than one causation, merely lumped together; variety in autism-associated genetics suggests that this is the case. Until more definitive, perhaps neurological, diagnostic testing can be done I don't think that accuracy in diagnosis is going to improve greatly.

Hello Martin, 

Many thanks for your considered response.

I agree that when done correctly ASD diagnosis is transformative for people, it certainly was for me. I also agree that there is under diagnosis of ASD for adults.

You are a bit older than me and my understanding from my own experience is that being diagnosed in the 1980s as I was is rare. I imagine when you were at school it was unheard of to be diagnosed with autism?

In regards to the example you give selective mutism is a condition in its own right. If a child is presenting like that today they would be referred to a Speech and Language Therapist. It is more common in people with ASD so does add weight to a diagnosis.

My question isn't in relation to generations who went to school when ASD is unheard of.

There is much better awareness now in schools (although there is always room for improvement) and this has led to massive waiting lists sometimes of years. I heard of one waiting list of four years.

This is being dealt with by farming this work out to the private and independent for over 2k a time. There is massive variation in the quality of this work and when I compare the services I worked for in the NHS to my recent independent sector experience I can confidently say that children and young people who don't have ASD are being diagnosed.

I am aware of cases who have been seen for many hours by NHS specialists and deemed to not meet the criteria who go private and then are diagnosed.

The 'gold standard' assessment tools are not fit for purpose as described above and it's a closed shop in terms of discussing alternatives. Everybody has developed their own questions and diagnosis has become somewhat more of an art.

For me an ASD diagnosis can be very helpful but I am concerned about people who don't have ASD getting the diagnosis as this is a life long label and does inform self image.

I wonder if I should be concerned and whether people should be able to self identify? Does it matter what labels we give our children?

All this is very contentious and I don't profess to know the answers but very grateful to be able to discuss.

Regards

I was privately diagnosed aged 59. I have always coped in society, except when I started school and was selectively mute, first for 3 months then on and off for shorter periods for the next couple of years. There are few things about me that would strike a stranger as being out of the neurotypical norm. I have problems, however, sensory and communicative and high levels of anxiety. My life only made sense to me when, by accident, I realised that I was autistic. I'm very thankful that I was fortunate enough to be able to afford to get a private assessment and diagnosis, as this validated my entire life experience. I rather think that under-recognition and under-diagnosis of autism is a greater problem.