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.

The thing is, late diagnosis doesn't mean late symptoms. I had hallmarks of ASD/ADHD from early childhood. I was 'different' throughout my education.

• I was speech delayed/disordered (not sure which. My parents said I talked incessantly but nobody could understand a word I was saying).
• I was given a psychological evaluation at almost 4 because they wondered if I had intellectual difficulties because of it, but they found that I had an IQ of an 8 year old (except I couldn't tie my shoe laces).
• I was a free reader at the age of 6 and was used to listen to other children read in class
• I wasn't allowed to do times tables tests because I got 100% all the time, so I had to do 'investigations' instead
• I frequently wasn't allowed to do maths because I was too far ahead in the text book so other kids needed to catch up.
• From a young age I'd cry and get distressed if there were more than 3 people in the room, so my mum would have to take me home
• I started school refusing when I was 7 (I vividly remember the head teacher phoning my Nan's house and asking me to go into school so he could give me a special pen. It was a green Stabilo pen)
• The school asked my Mum to take me to see a psychologist when I was 7 or 8 for low self-esteem (it was NHS but CAMHS wasn't properly established until 1995)
• I could not keep my mouth shut and would get into trouble with teachers for what I thought was logical, and they thought was impertinent.
• I was bullied by my peers
• In secondary school I couldn't get organised with homework despite being extremely able. My science teacher refused to put me in for the higher paper because I didn't do homework but then I got an A Grade on the intermediate paper and finished the exam 40 minutes early.
• In college I was nearly made to repeat the year because I hadn't kept any of my notes from my course and the teacher insisted on seeing a full set of notes prior to year 2 enrollment. I had to photocopy notes from a class member.
• in university I did all my assignments at the last minute because unless I had insane pressure I couldn't sit down and study.
• I had two 'breakdowns', one in the first year of college, and one 3 months into my first full time job. They were diagnosed as chronic fatigue syndrome but it is now thought that it was autistic burn out.

I could give many more examples. What I'm saying is that it was all there. Just because it didn't have a name doesn't mean it didn't exist. Many late diagnosed people with autism/ADHD will be able to give a long list of examples of how things were different for them as a child.

I’m asking how they can differentiate between children who present in the same way?

You can’t base the diagnosis on the interactions with the parents because the parents might have additional needs, or the parents might be shit but the kid still has additional needs…

How do you say this kid has autism but this kid with exactly the same behaviours and difficulties doesn’t?

How does this pan out in families where the other children are toilet trained and without speech delay? Often it’s not all children in a family. Are professionals still not able to differentiate then?

I’m not paid £££ to diagnose. Others are and are very skilled at their job particularly within the NHS and when linked to schools.

Where did I say girls can't have autism? I have never said that. I have a boy on the assessment list so I am going to be talking about him.

So they can only diagnose if other children in the family are presenting as neurotypical? Because otherwise it’s shit parenting and not just hereditary additional needs?

How do they differentiate consistently and effectively?

Read the thread, others are. It’s the message being given loud and clear- because their autism amd adhd can present differently to boys it’s not valid.

As I said I’m not a highly skilled diagnostician, I’m sure many that are could explain.

Well I haven't said that so not why you replied to me.

They base their diagnosis on behaviours. Not blood tests or brain scans or any other definitive testing method.

Lots of things can cause these behaviours.

We’re saying there are children who present with these behaviours for other reasons and who are diagnosed as autistic.

You’re saying that’s not possible or likely.
I want you to explain the fail safe diagnostic assessment for that assumption.

It's different though. Those children thrive when they are exposed to the 'right' environment. Just as children with glue ear see rapid improvement when they get grommets, children with poor eyesight improve when they get glasses, and children with dyslexia show their ability once language doesn't get in the way.

Children with developmental disabilities and/or autism are like Blackpool rock - it doesn't matter where you snap it, you'll see 'Blackpool rock'. It's the same. It runs through everything.

ADHD, I'd argue, is slightly different, because medication can reduce the impact of ADHD for windows of time. But often delays are present from the lag in identification and treatment, which means that there has been lost learning time.

As I said I’m not a diagnostician and neither are you.

That's not at all what is being said. You're taking personal offence at something that isn't there.

Admittedly though I wish I had the child even with autism who can speak! Boys probably tend to look more obvious, more delayed although I have seen some girls where it was obvious they were severely autistic and were given an early diagnosis. I don't deny girls can be autistic though.

My son also doesn't play with other children, he won't play in park as he would rather play with a gate. He also won't speak in front of people. He runs away if given the chance. He is obsessed with water, lines things up. He also repeats a word a lot. He is having problems with hitting other children etc. It isn't just the lack of speech. He wasn't interested at all in the Easter eggs.

Nope don’t think I am, you clearly haven’t read the whole thread.

Bingo with the it isn't SEN. Just poor parenting comment!

My daughter was late diagnosed autism and adhd. Still had speech problems and speech therapy at 4- stammer and repetitive phrases, loads of other indicators too. Clearly not the right speech problems.

Oh for god's sake. I doubt my son is going to get a diagnosis until he is at least six and then I will probably have to watch him struggle at school as they think he might not cope with mainstream. It isn't a competition! He isn't even getting any SALT involvement. They have left it with the school!

No one is saying that it doesn’t exist.

Just that poor parenting and childhood trauma can manifest the same behaviours.

How do we tell them from one another because they’ll all need different methods of support/ treatment?

No I’m just pointing out that as boys are doubly likely to have speech delay and apparantly instantly getting an autism diagnosis as a result we can see why girls who are then berated for late diagnosis are being late diagnosed. Communication difficulties can present differently in girls.

My daughter was diagnosed at 16. Following depression, self harming during Covid and referral. Her school never picked it up and we didn’t have a clue. We had just adapted to her needs - only once the doctor sat us down and explained we had a lighting bolt moment.

She is now 22, and with the right support and understanding has gone to university, graduated and has a job which she really enjoys. Still lives at home - hoping though she can move out in time. It’s a label she has taken a while to accept and rarely shares it.

I often wander if she hadn’t got her diagnosis whether the path would have been the same.

My younger daughter is very different with at times challenging behaviour- people (before my eldest diagnosed) would say is it worth getting her tested - no she was just a challenging second child! It is easier with her - she is currently revising for GCSE and has a good friendship group - neither of these my eldest found easy.

My eldest sees the world differently, and as much as I may hate finding her socks in the hallway as she can’t wait to rip them off her feet, or the 4 outfits she wears on rotation regardless of the full wardrobe. Or her loneliness sat with us on a weekend as she hasn’t made close friends. We are very proud of her for what she has achieved in a world that wasn’t quite built for her.

It’s the first thing people jump to though. School avoidance = ND. When actually there’s a whole host of reasons why a child may not want to go to school or may struggle with it.

People don’t want to explore the whys, it’s much easier to have a ND diagnosis (or assume one).

I have listed other behaviours he has later in the thread. It isn't my issue that your child had a late diagnosis. Plenty of boys and men get them too. It is a spectrum after all. The earlier the diagnosis the more severe it is. Do you prefer for that to be the case? I am sure we all prefer it not to be.

Do you know how easy it is to get an ND diagnosis?