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.

My DD is currently seemingly “ unaffected “ by this I mean because of environment and needs being met.

it can take years but you can get there

she is the right school, we know how to keep things right for her at home.
this may change of course as something may change this and then we need to find different ways but at the moment she is doing great and her independence has soared !

I'm not gatekeeping anything? It's an observation. I hate to tell you this but I don't control the budgets.

You may want to have a look at the changes to school send support that are coming.

https://www.bbc.co.uk/news/articles/c93wg6z1p3go

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(21)01541-5/abstract

https://www.specialneedsjungle.com/legal-challenge-against-send-proposals-significantly-weaken-legal-rights-children/

^^This, with bells on. Yesterday I was almost pushed down the stairs, today her breakfast plate has been thrown across the room and I can't get her out of the house. Who knew she wasn't autistic enough, just because she can hold a conversation when regulated and go to the toilet independently.

Therapy isn’t a magic bullet. My brother has had years of it and hasn’t changed.

He’s had therapy, rehab, more medication than an average pharmacy on a typical day, hospital stays, intervention, GP support and more.

But you can’t cure autism. You can learn to live with it and I think some people are just better at that than others. But for others there is nothing you can really do. My brother is now approaching 50, never held a job down, never had a relationship, hasn’t got any friends and is in a bad way, to be blunt about it. It’s very sad and I’ve wondered what went wrong, what could have been done differently. I do think a lot of it was early loss of parents for us both but even so I think he’d have struggled a lot.

I've seen them and written to my MP who is active in the SEND space. But if parents of profound autistic individuals turn on those who appear high functioning, it doesn't help, we need to all fight together for support for all people impacted by autism.

I've seen quite a few parents or friends of those parents with profound autism lambast all the parents of supposedly high functioning children - how does this help at all?

I've been diagnosed used with autism. I probably have adhd too, my son who has been diagnosed is the same as me.
I don't get any support for my diagnosis. I got it to understand myself, and to hopefully get rid of the labels that I had growing up - lazy, stupid, slow, unorganised etc. All this current discussion around whether people should be getting a diagnosis does is make me think that actually there's nothing wrong with me at all and I am all those things I was told I was growing up. It makes me feel like all my failures are something that could have been avoided if only I'd tried harder at everything in my life. I then feel guilty that I still struggle and can't just cope with normal stuff like everyone else.

I'm so sorry, it's so hard isn't it? Some days I feel so tired and sad about it all and others I'm fighting everyone for help. Sending solidarity.

But isn't that behavioural rather than autism? You've said she can hold a conversation (does she understand the conversation) when regulated and understands her own toileting needs. Is it sensory when she becomes dysregulated or is it her not understanding her emotions in that moment- genuine question/ trying to understand.

My ds is severe in that he can't have a conversation (classically severe/ what os defined now as profound) and as much as he may smear food etc if he gets something on his hands (sensory), he wouldn't throw a plate. I don't think he would push me down the stairs but he would cuddle me too hard (sensory seeking). He'd be more likely to hurt himself than somebody else through repetitive movements or seeking sensory input.

There is only a finite amount of money and the people who live and pay normal tax ( as ooosed to some offshore or CGT device ) have been. Taxed at tipping point. The reality is that there is not enough funds so by all means be diagnosed but it means that the cake has to be shared by more people. Who do we make cuts from? The most severe who need full time support or those who with a bit more support will do better at school?

The argument is not about diagnosis

These behaviours alone can also be shown by NT children who are overwhelmed or upset/angry/not in control of their emotions - whereas profound autism is unlike NT behaviour. Perhaps your DD has autism, perhaps there is something else going on.

I think it's frustration. As a parent of someone who is profound I get frustrated with the narritive of the difficulties being geared towards people who have a different set of needs. Autism support in society is generally geared towards the more able eg relaxed performances at a theatre or special autism clubs (think short breaks). People with profound autism are naturally left out of the conversation because they can't join in. So usually, "all together" means in the best interests of those who have different needs to their children and not having their childrens needs recognised.

I'm also going to throw in a bit of jealousy. It's very difficult to see someone discussing autism in terms of marriage and careers or friends and masking when those things will never be on the cards for your children. While I appreciate and understand that things like masking and it's impact can be incredibly difficult I also can see that some parents would love to have that difficulty instead of the battles they fight. (Not meant to belittle, just trying to explain)

I don't think it's about turning on each other more about having needs recognised and met. That goes for the person with the autism and the parent/ carers who experience the situation differently too.

I think this is where splitting the diagnosis again would be useful, it would allow support to be aimed and at and appropriate for different groups.

But what difference does it really make in a material since if your difficulties are caused by autism, or something else, or your own nature if you are not getting/accessing any support? Is the diagnosis only a tool to enhance your self esteem? I am curious what you get from it if you are able to live a regular life without any additional support.

So she is affected if the environment isn’t just right and she is not supported? That is consistent with what I am saying. If you had never seen difficulties then I doubt she could ever have got a diagnosis.

Waiting lists and costs are irrelevant to the clinical decision to diagnose.

I do believe there are some assessment centres who do diagnose too easily based parental reports, and without ability to consider differential diagnoses. That doesn’t rule out other places being incredibly thorough. Like any field there are the good and the bad.

Why not? It provides an excuse for their own behaviour especially if they have social services involvement. For many it is not a fight either - a GP sees issues (especially if backed up by social services) and refers on. There may be a wait but that is not ‘a fight’.

She's been firmly diagnosed with autism and associated anxiety by a multidisciplinary NHS team that included paediatric phychiatrists. But you've again illustrated the gaslighting and disbelief that parents like me face, every day. Her communication difficulties and repetitive behaviours and interests are all there a mile wide. This is not simply a typical child struggling with emotion, it's nervous system collapse - it looks very different, though i appreciate it's hard to comprehend if you've never experienced it.

These are not typical 9yo behaviours in a child who has no trauma, no neglect, and has been raised in exactly the same way as her older brother who displays none of this.

You’re waiting years for an assessment because so many people are being referred.
Not because the assessment system is thorough and a long-term, intense study of each person, their specific situation, their living environment, their parental interactions etc.

She's been diagnosed by a multidisciplinary team, so I have no need to play one upmanship about whose child is more autistic. She has multiple sensory differences that have been evident since early childhood and is currently burned out and recovering.

I'm well aware that no one is spending 3 years undergoing assessment, I never suggested that. I know it's due to waiting lists for referrals and the NHS not being able to see people in a timely manner.

My point is, a lot of people seem to think you just rock up at a doctor's, tell them your kid is badly behaved and doesn't like talking to kids at parties and bang, they get an autism diagnosis.

So children/people who aren’t good at coping with life shouldn't get support unless they have a ND diagnosis?

You said: “My brother is autistic. His struggles are profound and significant but I cannot think of anything I or anyone can do to actually support him.”

What has competition or not got to do with being unable to see any support needs for someone you claim is profoundly autistic?

Children often didn't start school until the term after they turned five. Some kids went straight into middle infants (Y1) missing Reception year entirely. Lunch time was two hours. Children were older when they started, had more free play and teachers were allowed more flexibility to fit the curriculum to the children in their class.

No. But stating that it’s hard simply because you wait years isn’t true. It implies that it’s a long, in depth study of the child. When in reality, it’s a few face to face appointment with reported behaviour from parents and school.
And even if school report no problems at all, the parents can say they mask at school as supporting evidence.
It’s open to so much abuse.

I was trying to understand and see where these behaviours come from in regards to autism. It wasn't one upmanship, I was sharing to explain where I was coming from in hope you'd share in return.

Not everyone with autism displays behaviour like this and if the mdt have put it down to autism if I was you, i'd want to know why and how they would approach/ support.

I can only speak from my experience but it was thorough and in particular the observation/ADOS part of the assessment. A SALT did my child's and the issues with her verbal and non verbal communication she picked up and reported on surprised me (probably because I was undiagnosed autistic at the time so thought it was 'normal'). I honestly don't see how an adult, let alone a child, could fake being autistic, with all of the nuances of verbal/non verbal communication which is being looked for in an assessment.

I wasn't suggesting the length of the wait was indicative of the type of assessment at the end of it, just that if you can't afford to pay privately, faking being autistic for 3 years whilst you wait for an appointment is a lot of bloody effort.