To find the growing narrative of over diagnosis (autism, adhd and mental health) upsetting and draining

[Frazzlesforever]

There seems to be a drip drip of press headlines and change in the conversation that too many people are getting diagnosed. And that some parents are being too pushy to get extra help or trying to get be benefits etc.

As the parent of a high masking autistic girl I had to push for diagnosis although the school just saw a highly compliant, quiet anxious child. My daughter is now extremely mentally unwell through not coping in school, has had to drop out of school missing her gcses, emergency CAMHs involvement - devastating for her and us.

She is exactly the type of child who would fall under the radar. Just an anxious child with over anxious parents. Apparently seeming to cope until she just couldn't. Surely if anything we need better understanding and support for these types of children not less. Otherwise we also risk kicking the problem down the road To severe problems in adulthood. - poor mental health/outcomes etc.

Benefits, including the motability scheme, and extra help are based on needs, not diagnosis. You don’t need a diagnosis to get them and a diagnosis alone doesn’t make you eligible.

Nope it will make things ten times worse for all as is widely recognised . You can’t categorise autism.

Read the thread and do some research. Autism and adhd are under diagnosed and benefits are allocated by need.

We clearly don’t share the same contacts then. I think that narrative was more popular ten years ago. I also remember looking for children’s books explaining autism and nearly all of them ended with some sort of compensatory skills or ‘superpower’ - “my brother can’t do x,y,z but wins competitions writing stories/playing the drums.”

Recognition isn't, his dxd has changed when the dx was widened. Some services are dx dependent and some services are for autism but not my sons.

That doesn't make sense. How?What services?

There is a very large group of professionals and families who disagree. Hence, the discussion around the orofound autism dx.

Struggling families, women, men and children with destroyed lives needing services, care, treatment and support that aren’t there are far more common.

And an even bigger group which agrees..

In our trust there are specific slt, ot and dietitians which can't be accessed without a dx to save resourse waste. There are short breaks which are dx dependent. There are national helplines and support which are based on dx.

Prior to the 2014 changes if i said autism to people, most would associate with rainman but the picture in their head would be of someone with severe needs. Now if you say to people autism, it's associated with Greta T (who did say it was a superpower), youmg kids who like trains, the good doctor, sheldon and using a sunflower lanyard to get through the airport.

In terms of the profound autism diagnosis argument - I can see the need but I also think splitting profound/not is a huge oversimplification of a very complex set of different conditions. A child does not have a set of comorbid conditions - they don’t have LD and ASD, or ASD and ADHD, or even just ASD. These are all just various aspects of the presentations of that child’s actual condition. I saw an interesting report on a cohort of children with various different ND diagnoses that looked at their brain activity. What was interesting was whilst they did form into groups those groups did not align with their diagnoses. I think there is a danger in grouping autism together as a single condition in research that means the real range of what might be hundreds of different conditions, and the way they present across various diagnostic labels, is hidden.

All those things will be allocated according to need soooo….

What services are you being denied because of the diagnosis of others if your need is greater?

And for a while a lot of them were hanging onto the superpower narrative as if it were some kind of life ring.

Because there are more people who don't fit in the group. Thats the point.

How is it detrimental to the rest of the people who have autism to seperate off this group? Their needs are different, the way they present is different. If it was me and who knows it still could be and i had a dx, i would want mine to be different to my ds'.

The needs of all differ, there is no homogenous group .

Is anyone actually getting anything from this thread after the last few pages of back and forth?

The services aren't there because the services for autism aren't for my son's version of autism. They can tick box that they meet autism needs for whatever service but generally they are for kids who are nothing like my son.

Why does it matter so much, if him and people like him are seperated to you by dx? He'll never argue on a sm grouo like this, shouldn't have children (it would mean abuse) etc you're completely different. How can recognising that be of detroment to you?

As an adult with ADHD who was diagnosed in adulthood I can confirm there is no support out there, so we're absolutely not taking away resources from those in need.

If I had been diagnosed in childhood maybe I wouldn't have tried to kill myself when I was twenty five. I'm now thirty five and I have a house and a family and a good job etc., but without my diagnosis I would still wake up every morning hating myself for finding things so incredibly difficult. My diagnosis was the greatest gift of my life, because it freed me from the trauma of thinking I was simply inept and thoughtless and showed me that I'm just existing in a world which isn't set up for me to thrive.

This group can be seperated out and to their benefit too.

How does sperating them out cause you a detriment especially if as you say everything is allocated on need as needs are so different. It wouldn't matter to you but it does matter to me and families like mine.

The services aren’t and weren’t there for my children and neither is the treatment or care so as a family we got zilch until my children deteriorated so badly they were at consistent risk and constantly hospitalised.

Do you get zilch? Has your child been left to deteriorate to the point they’re at risk of death?

“Aren’t for my son’s version of autism”

As explained, this isn’t unique to those with what is being termed as profound autism, though. It applies to many others with autism too.

DC with what is termed profound autism should have EHCPs. SALT and OT can and should be in F of EHCPs. DC don’t need to be reliant on the typical NHS offer. Depending on what dietetic support is required, that can also sometimes be included in F too.

Oh and I battled, long and hard. You don’t own being ignored.

What benefit does a separate category give if not more resources? What is it that you would want? Recognition? Services?

DD1 gets a lot of services because she needs them. If/when she is more stable, those services will step back a bit. If she then destabilises, they'll step back in.

The LD service that deals with her is the same one that deals with profound autism, as you like to call it. Same system.

It is people like Jonty Bravery who are our warning against the demarcation of diagnoses based on exacting criteria. If people had been less afraid of using the 'conduct disorder' label, they would have realised that he was at risk of personality disorder.

The tighter the diagnostic criteria get (the more specific) the less sensitive they get (they miss more people who qualify in terms of severity but are excluded on a technicality). Those people will have unmet needs. They are the ones who are most at risk and the most risky, because nobody is watching, nobody is monitoring.

DD1 fell through the LD gap in COVID. My concerns about eating disorder were ignored because CAMHS phoned on the same day that paeds saw her. They were both relieved that the other was involved and therefore both discharged to each other's care. It took me 6 further months to get anyone to listen, by which time her weight for height was 69% and her BMI was 13.5. She required hospital admission and has been under psychiatry ever since.

She fell through the gap again last autumn. She didn't want home visits, then the LD service moved but the premises were unsuitable for patients. So a gap in appointments for 3 months. The psychologist saw her again in November and realised that the reason I had been telling her DD1 was really hard work is that she was psychotic. It's taken 4 months to get her out of the state she was in and at one point they thought that sectioning might be necessary.

@Nmss I can hear that you feel that the impact of your DC's needs is being minimised by people getting an ASD dx who have skills, abilities and futures that you could only dream of for your child. I feel the pain for my DD1, despite the fact that she is verbal. I don't think a new label will help.

And an even bigger group which agrees...

It isn’t a case of the biggest/most vocal group wins/is correct. There is an even bigger group of people who are not autistic if it were about size of groups. I have certainly seen some large online autism groups that very fiercely police language and beliefs within their groups creating echo chambers of beliefs around autism - just look at the impact of them shutting down that genetics study a few years ago. There are loads of people with autism as part of the presentation of their genetic conditions who would have been very pleased to learn more about it - not least because these genetic conditions can come with life-limiting concerns like cardiac issues.

No and that is a terrible thing for you and your family but what difference does mine having a different dx make to that or change for you?

It is awful and everyone should be supported but why stop families like mine trying to improve things for themselves?