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.

You cant get a diagnosis for the sake of it. You have to demonstrate that you're impacted by it

I don't think I've met anyone who received a diagnosis for shits and giggles. They were struggling

What are schools doing that so many kids aren't coping?

That is the correct question.

See the I hate Michael Gove thread in active convos for further details.

Also - one in ten kids is dyslexic. There’s 10% right there. If you assume autism and ADHD (separately and combined) are another 5%, that only leaves 5% for all other disabilities in mainstream, including hearing impairment, language delay, dyspraxia, dyscalculia, physical disability etc.

DLA/PIP are based on needs, not diagnosis. You don’t need a diagnosis to receive DLA/PIP. Not all with a diagnosis will meet the eligibility criteria.

A diagnosis doesn’t automatically result in exam access arrangements. Conversely, a diagnosis isn’t required for EAA.

A diagnosis doesn’t automatically result in more support at school. And a diagnosis isn’t required for schools to provide SEN support or for an EHCP.

A diagnosis doesn’t automatically qualify someone for a RAP. And you can meet the eligibility criteria without a diagnosis.

I was answering a question about why parents of children like mine may behave a certain way. I can't speak for all but I can hazard a guess, i'm not sure what point you are trying to make other than your son has complex needs with autism and no ld as many do. That isn't profound autism. I was trying to answer a question as a parent ofsomeone who has the old diagnosis of autism/ new profound diagnosis.

You wrote that he displays challenging behaviour but that it isn't behavioural it's because of his diagnosis. Many kids with autism have challenging behaviour, my son does because of his autism too (certain repetitive behaviours, eloping, squeezing too tightly are some, there are others). He's also 2:1 etc

I'm genuinely not sure of your point. Do you mean that he understands his behaviour (no ld) but can't help himself/ control himself? I'm not sure what that has to do with parents of profound kids being rude to parents of other kids that aren't?

I have a DD diagnosed with dyslexia at 14 years old. It didn’t show up until she was older and the volume of reading and writing increased. Turns out that she is a very slow processor.

The diagnosis changed her life. She had become depressed and had ideations of self harm, after being a very sunny child. With the diagnosis, she had a self understanding and 25% extra time in exams which really helped. Her anxiety went away.

She went on to study Maths, Further Maths, Physics and Chemistry. She got 4 A*s and is studying STEM at Oxbridge and is pulling a first. Not only is she happy, but she should end up being useful to society.

I can understand that some people would think the extra time unfair. I would be very happy for everyone to have 25% extra time to reduce the time pressure. Not everyone will have a diagnosis, and all brains work differently. I don’t believe being a slow but deep thinker will hurt DD in the workplace. I don’t believe that she will need any accommodations.

The point I was making in my first paragraph was that SEN sessions “eg relaxed performances at a theatre or special autism clubs (think short breaks)” aren’t necessarily “geared towards” those perceived as “more able” rather than those with what some are now calling “profound autism”. I was pointing out such sessions don’t work for many even those you think they are geared towards.

I didn’t say DS3 did have profound autism. Quite the opposite since I said “has what would have been described as high-functioning autism. Note, not Asperger Syndrome because, although his IQ is above 70…”

My second paragraph was in reply to you saying “isn't that behavioural” to another poster. I was pointing out just because someone doesn’t have an LD doesn’t mean their challenging behaviour, including violence towards others, is behavioural.

No, my DS1 doesn’t understand his behaviour. Not at all.

I wasn’t commenting on any rudeness. Although, I see equal amounts of rudeness from both ‘camps’.

A poster asked me directly why they had witnessed parents of kids like mine being rude to parents of kids like theirs and said we should all be in it together to help everyone.

I was trying to explain why that may happen and why many parents of more severely kids may behave like that. It wasn't a generalisation, it was a direct question that I answered from experience. Many kids/ people with autism can access short breaks/ relaxed sessions, thats why they are there. Do you really believe that when they commission them and advertise them as autism friendly etc it's with peoplelike my son in mind?

For a person with no ld to behave violently (if that is what you are refering too given in the instance about behaviour i was replying to someone who said her kid has pushed her down the stairs and thrown a plate across the room with no ld) there has to be some behaviour to it. In the absense of ld they should be able to learn that type of behaviour is wrong. Repetitive movements are part of autism, they can be addressed especially with no ld. Pushing someone down the stairs isn't a repetitive movement. Autism shouldnt be used to not address any other underlying issues even if they are related in some way eg sensory

Challenging behaviour without ld is behaviour. Its behaviour with ld, its in the name. Surely without learning disability/ low iq they can understand the impact of such behaviours?

*Ld referring to learning disability not learning difficulties.

If he doesnt have a learning disability which includes social aspects and activities of daily living why doesnt he undetstand his behaviour? Genuine question.

My response is clearly directed to a specific poster whose child's impairment is most definitely profound, in both the severity and all-day-every-day sense.

@ChasingMoreSleep i'm doing this n trying to multiple other things at the same time. Just putting it out there, from what youve wrote about your ds i'd look at learning disability. Activities of daily living etc. Especially if he doesn't understand his own behaviours. It isn't just about being academic.

I’m 50. On the surface I have a successful career, a family. But life has been fucking hard. I’ve had to work 10times harder than NT to even appear to stand still, constant inability to fit in, decades of suicide ideation and othe MH issues therapy couldn’t touch. Having a dual asd/adhd diagnosis has helped me immeasurably esp sine Peri completely fucked up my coping mechanisms.so yes the person you describe can absolutely benefit. It has given me peace that I have a biological condition that’s made life so so hard and terrible - looking “normal” has come at a terrible cost to me.

imagine living your life thinking the rest of the world doesn’t make sense and the amount of effort navigating that - imagine how much energy that takes.

@Nmss DS1 doesn’t have a learning disability because his IQ is over 70. However, he has a whole range of complex physical, medical, psychological and developmental conditions that mean he is incapable of understanding. He can’t put his IQ into practice in real life. For example, he gets PIP now but when he got DLA he met the criteria for SMI because although he has a higher IQ, he can’t put it into practice in real life so still met the “severe impairment of intelligence and social functioning” part of the test. He needs care with all ADL.

I know what you said. I read your posts. I was replying to what you said.

Many kids/ people with autism can access short breaks/ relaxed sessions, thats why they are there. Do you really believe that when they commission them and advertise them as autism friendly etc it's with peoplelike my son in mind?

And many can’t. I didn’t say such sessions were aimed at your son. I was pointing out they weren’t aimed at mine either.

For a person with no ld to behave violently (if that is what you are refering too given in the instance about behaviour i was replying to someone who said her kid has pushed her down the stairs and thrown a plate across the room with no ld) there has to be some behaviour to it.

Wrong. Utterly wrong. DS1 has dozens of professionals involved in his care, none of them think it is behavioural in any way.

In the absense of ld they should be able to learn that type of behaviour is wrong.
Surely without learning disability/ low iq they can understand the impact of such behaviours?

No. Not all can even if they don’t have an LD. DS1 can’t. Everyone involved is of the opinion it isn’t a matter of him being able to learn/understand it is wrong/not to do those things.

Repetitive movements are part of autism, they can be addressed especially with no ld.

As I said, DS1 doesn’t have ASD or ADHD. He does have other complex needs, some of which come under the wider ND umbrella. He also repetitive movements. His can’t be addressed in the sense of stopping them. No-one thinks they can be. They can be reduced to some extent by meeting his needs but they will always happen.

Pushing someone down the stairs isn't a repetitive movement.

I didn’t say it was.

I’ve had to work 10times harder than NT to even appear to stand still

I think this is an issue in both directions - the idea that other groups always have things easier. I think it is a reason why some people are resentful of those getting diagnosed - because with a diagnosis they have a reason for their difficulties whereas those without don’t. Sort of like a diagnosis letting people off the hook. Equally calling everyone without ASD/ADHD ‘neurotypical’ ignores the many conditions they might struggle with - to the extent that it is actually ableist. Yes some people appear to swim through life with little effort but we don’t know what is really going on in their lives. It reminds me of various autism advocates loathing for ‘autism moms’ except we now realise those mums are also invariably autistic too.

I'm just at a loss as to why you'd wade in then replying to a post that was an answer to a direct question about parents of kids with autism when you're not a parent of a kid with autism?!

Also discussing regarding autism with/ without ld and behaviours if your child doesn't have autism?

I'm not going to go against professionals you have involved but if you're saying he doesn't have usable iq, requires all that support and doesn't understand. Im curious about it. Ld isn't just diagnosed on iq alone at least my ds' wasn't. Which is why i'm curious.

If you wanted to discuss your children you could have just posted rather than shoehorning them into a question directly relating to autism that I answeed when they dont have autism. If it was to start an argument with me, i'm at a bit of a loss as our kids don't have the same diagnosis and i'm not sure what your point is other than your childs different diagnosis or saying challenging behaviour isn't behaviour.

In regards to the pushing someone down the stairs, that was the behaviour that was originally discussed which i had said was behavioural not autism.

Their children.

Early help or family support, classes, parenting strategies, how to set boundaries, use of SM and technology, etc.

Schools.

@Nmss I am a parent of DC with ASD. Try reading my posts. DS1 doesn’t have ASD, but I have other DC who do, including DS3 who was the DC I was discussing in relation to the SEN groups, relaxed performances, short breaks.

In England, most LD services will now dx LD if IQ is higher than 70 even if the person cannot put that into practice.

I didn’t shoehorn my DC into anything. I was responding to aspects of your post. That is how a forum works.

None of those things erase autism and the huge parenting difficulties and behaviours it brings.

Unfortunately, what I have seen here, is that the mental health trust diagnoses ND; but it’s quite clear when it comes to delivering non drug treatments, the therapists, clinicians, etc can’t adjust their approach for ND patients! Even if the intention is there to give treatment to ND patients, it doesn’t happen in reality!

For instance, DD’s therapist just couldn’t understand that she takes language literally; she can’t see the higher intent behind it; and the therapist complained about DD’s black and white thinking!

When I complained to the carers group about this, they said they’d heard it many times!

At that stage support should be available. But there are blockages caused by parents who want something to be wrong rather than look at their part.

I completely understand why Joanna Public finds it hard to believe people are trying to milk/game the system. But they are. Parents come to schools armed with all the buzz words and a friend who is an expert. 6 parents at my last parents evening wanted to know if their child had x,y or z. That's on top of the 6 who do. Not one of those new 6 want to take any of the self help ideas offered, they want me to say something is wrong. That is what you're are up against and why you are having to fight so hard. You have my sympathy; my school is fighting as hard as you are for those children with need.

Those parents aren’t blocking anything to other parents and maybe just maybe they know their kids better than you who thinks you parent your way out of autism- you can’t. Early Help did absolutely zilch towards my kids autism aside from fund therapy for me. Years of family therapy did nothing.

What did help was the right autism awareness treatment that we had to battle for whilst being ignored and dismissed by people like yourself who are hugely ill informed as to what parenting and supporting a child with autism is like .

Now i'm really at a loss all tge conversations you ref'd were in direct regards to autism so not sure why DS1 was relevant at all to any points if he doesn't have autism?! This is where i'm ref to shoehorning. Replying on a forum is usually about context and relvance.

I'm interested in this thread and i'm guessing from my posts you know why i'm busy. I'm not interested in being goaded into an argument especially in regards to me answering that question about parents in ernest.

I'm sorry that your other ds can't access autism short breaks too, it's pretty crap, isn't it?!

Those who have an actual need are being tarnished by the growing number of parents who seek a diagnosis for benefit/housing reasons.

As a social worker, I hand on heart cannot recall working with a single family in at least the last five years, who doesn’t have a child with a diagnosis or wanting their child to have a diagnosis and it is always referenced in benefit and bedroom needs, alongside other benefit boosters (being a ‘carer’ fibromyalgia etc)

Benefit fraud is basically the norm for many, social services and other agencies turn a blind eye because the level of need and the impact on the families income and consequent care of their children would be considerable.

Severe and obvious trauma in children and (very) poor parenting is seemingly overlooked on a shockingly high basis when it comes to symptoms that mirror or perhaps co-exist with neurodivergence and diagnosis’ are given out of context of children’s home environments.

If you read my posts, you will see why I originally mentioned DS1. As I explained, the second paragraph of my original post (the one mentioning DS1) was about pointing that just because someone doesn’t have an LD doesn’t mean their challenging behaviour, including violence towards others, is behavioural. That applies to those with and without ASD. Hence mentioning DS1. My mentioning him since has been in reply to your posts. That isn’t shoehorning.

I am not goading and have not goaded you into an argument.

Yes, it is poor not all are catered for. Although DS3 has a large EOTIS package and social care support so not being able to access short breaks isn’t an issue for us. DS2, also autistic, can’t access them either and has social care support instead.

My pp should have said “In England, most LD services will not dx LD if IQ is higher than 70 even if the person cannot put that into practice.” Not ‘now’. Sorry. Completely changed the meaning of my post.

I know and i agree it shouldn't happen. We need better diagnoses of mh and def more support. I could also do with the lottery numbers and i think i have more chance of getting those. It is all cost saving, too many needing help and support and not enough provision and funding.