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.

No people did not manage.

So people without a diagnosis are not allowed to join via teams?

youalright

To say that if you are 60 and have own home and career means that you have no need for a diagnosis is utterly incorrect.
I was diagnosed at 61
All my life Id felt different and struggled. But I coped and had a career . A very highly stressful one .
However, when I hit late 50s , I went to the gp thinking I had dementia- I was struggling so much - for example so inattentive, I had fallen several time , plus my dh was anxious as he could see the issues we have known about getting worse.
I caused a house fire.
The gp told me that it was in her view classic adhd - she said that many women my age are now being recognised to have adhd as post menopause adhd gets worse in many.
I thought I was going mad.
When she discussed this it with me. My whole life made sense- such a relief .

The diagnosis was not an excuse , but a tool to help me manage my difficulties , and celebrate my good bits . ( the career that i had was hight stress, emergency work- typical career as people with adhd thrive in such areas- when I left and tried to do “ easie’ jobs , I was so bad at them !)
Surley the intense relief of finally understanding a condition at age 60 is a good thing. Or do people at this age not have a life worth these immense benefits… agist or what ?

No we are not all on the spectrum
The spectrum is a huge and autism impacts people in many different ways but you are either autistic or your not .

Mental health needs are diagnosed separately to autism. You really are talking nonsense.

Yes it's awful. I was your daughter and now I'm 53. I was diagnosed 12 years ago and that was wonderful, but now the world and his mother has autism and it seems that a lot of the understanding autistic people were starting to receive has diminished. Looking back, I was quite severely affected....wetting myself from anxiety almost every day, being left in the hall trying to eat my lunch when everyone else had gone outside, every day. Now just getting over a nervous breakdown and such awful health anxiety I'd rather just die than see the GP. Constantly having to figure out ways to make enough money when most afternoons are a right-off due to exhaustion. I get £30 a week PIP and that's it. There's no help for us and no-one sees the issues because we only go out when we're feeling relatively ok.

In person attendance was compulsory. My diagnosis wasn’t some sort of get out jail free card. The difference in such a small adjustment meant that I wasn’t being ill for days beforehand. They chose to give me an alternative.

I more than earn my keep at work and any small adjustment I get is nothing to what they get from me as a result.

I had similar. A small adjustment that made all the difference in the world to me, but doesn't impact anyone else at all. In fact, I don't think anyone would know I even have it. It's just it makes something a choice not an obligation for me. To equate it to your example, it's like having the Teams exemption but 99% of the time I'll be in person anyway, and others on the team would also occasionally have an excuse why they needed to join by teams and no one really cared.

I would have gotten it without a diagnosis but the diagnosis made it easier for the adaptations team to justify. The diagnosis gave me the confidence to ask.

Masking is when ND people, either consciously or unconsciously, suppress or hide their ND traits for the comfort or approval of NT people. It's not as simple as following the rules and it absolutely is a bad thing when it comes at a huge cost to the individuals mental health. For many children, masking in school for example, means that their anxieties build up throughout the day leading to an explosive meltdown once they reach the safety of home. This takes a tremendous toll on families and can lead to aggressive or self-injurious behaviour. I don't think Masking is a "dangerous word", I think the widespread understanding of what it actually means and its consequences are dangerous.

You may want to reread my post?! Instead of ranting at me over something I haven't wrote, read what I have written.

I've wrote about better mh support for those who need it. Are you really suggesting that mh needs shouldn't be diagnosed when autism is diagnosed or that autism should be diagnosed first. Some people may need their mh needs addressing rather urgently.

As a side note not everyone with autism has mh needs.

IMO there is no over diagnosing. I do think there are people with mild traits of things self diagnosing though and not saying their diagnosis isn't official. I think some of those people shout loudly about their "conditions" while having very mild symptoms which make other people think "Well if Lucy has OCD but seems fine, maybe I have it too". Also people will latch on to medical professionals saying things like "you might have X" and counting it as an official diagnosis. A GP once said to me "you've probably got a bit of PTSD". That's not a diagnosis. My son was assessed by several different professionals and given a diagnosis of autism and a written report explaining why. That is what a diagnosis means.

Of course there will be some people walking around with self diagnosed conditions which they actually have, just haven't had it confirmed officially.

Also I have met a lot of people who add the word "severe" to their condition when they have been diagnosed with mild or moderate or just the condition on it's own. My youngest has been diagnosed with level 1 autism and emotional development delay (his actual age is 11, emotional age is 3). So many people take one look at him and assume he has learning disabilities as well or describe him as severely autistic. He is cognitively quite able but doesn't often show it and he hates writing so does everything to avoid that.

If I didn’t have the diagnosis and a specific need, I would have had to attend in person. There are only a few occasions where they make it absolutely compulsory. They arranged several sessions on different days in different locations so that everyone could attend.

But no, people wouldn’t have been able to opt for Teams attendance. HR had to make a case to the management board and the compliance head before it was agreed.

When I was diagnosed they explained that they don’t ascribe a severity to it. So I wasn’t designated a level.

If it was that easy to get "extra money" for disabilities, I wouldn't have had 100% success rate at appeals* in 25 years of welfare rights work, with a client group comprising almost entirely of people with MH or ND issues.

*almost entirely for DLA/PIP, with a few for support group in ESA or limited capablility for work/work related activity in UC.

Another one who hasn’t read what has been written.

https://www.ombudsman.org.uk/making-complaint/what-we-can-and-cant-help/how-we-have-helped-others/trust-failed-treat-mental-health-young-person-autism

https://committees.parliament.uk/writtenevidence/49688/html/#:~:text=Executive%20Summary,has%20any%20specialism%20in%20autism.

https://www.ne-as.org.uk/case-study/we-dont-know-where-to-turn/

Just a quick search but lots of examples/ evidence if you google. Diognostic overshadowing is a very serious problem especially for yp with autism.

You may not agree but that doesn't mean it doesn't happen. The way you reply makes you seem unable to hold a reasoned discussion as well as being out right rude.

The people on there are probably the ones giving walkthroughs on how to game the system to claim disability benefits.

Well there clearly isn’t is there .

People can write whatever they want on the forms ,you still need evidence.

I was that child. And I've spent much of my life (now 47) comparing myself unfavourably to others, a square peg in a round hole - never been quite 'enough' as I am somehow. I don't want that for my dd.

“Those who I would refer to as having severe or profound autism don't have fluctuating needs or levels, they would be high support at all times, every day. Classical autism, Kanners. They can't mask and are obvious, usually diagnosed in early childhood.”

That is your opinion.

Individuals with severe autism can and often do have fluctuating needs
. While they may require high levels of support on a daily basis, their capacity, ability to communicate, sensory regulation, and emotional state can vary significantly from day to day or even hour to hour.

This phenomenon, often referred to as "fluctuating capacity," means that an individual might be able to manage a task or tolerate a certain environment one day, but not the next.
Reasons for Fluctuating Needs

• Sensory Overload: An autistic person’s sensory processing can vary, making the same environment more or less tolerable over time. A noisy or bright environment can trigger sensory burnout, resulting in a sudden need for increased care.
• Autistic Burnout/Fatigue: Sustained effort (such as "masking" or simply navigating the world) can drain energy reserves, leading to days where functioning decreases dramatically.
• Interoception Issues: Autistic individuals may struggle to feel internal sensations like hunger, pain, or illness (hypo-sensitivity). This means they might not show they are sick until they are very unwell, causing sudden, high-needs situations.
• Anxiety and Meltdowns: High levels of stress, anxiety, or changes in routine can lead to meltdowns or shutdowns, which require a recovery period with increased support.
• "Spiky" Profile: An autistic person may have high abilities in one area but very low ability in another, and this profile can feel inconsistent to observers.
• Co-occurring Conditions: Factors like epilepsy, gastrointestinal problems, or poor sleep can heavily impact an individual's needs on any given day.

What Fluctuating Needs Look Like

• Independence vs. Dependency: An individual might be able to feed themselves one day but struggle with basic self-care the next.
• Communication Gaps: A nonverbal or limited-speech individual might have days where they can express basic needs and other days where they are completely overwhelmed, leading to high frustration.
• Behavioral Changes: Sudden changes in behavior, such as increased aggression or withdrawal, often signal an increase in internal stress or an unmet, fluctuating need.

Recognizing that support needs are dynamic, not fixed, is crucial for providing effective care and avoiding burnout for both the individual and their caregivers.

“Mh needs def need diagnosing seperatley to help those with these needs get the support they need. If a yp is self harming, I would prioritise having those needs met and recognised. Not everyone with autism has mental health needs in the same way not everyone with autism has any other additional condition.”

This generally does happen, to say it doesn’t is nonsense. Often in CAMHs the ND diagnosis comes after and during treatment for the MH condition. There will be some bad professionals as there are everywhere.

Autism isn't a mental health condition- professionals know that.

Autistic people cannot mask. Behaviours are involuntary. I don’t doubt you have a genuine struggle and need, but it isn’t helpful to call this autism. It’s pseudo-science. There is no evidence masking exists as a specialised thing that is different in ND diagnosed people than it is in NTs. Masking is a necessary social function.

Educate yourself

https://www.autism.org.uk/advice-and-guidance/behaviour/masking?utm_term=&utm_campaign=SEND+campaign+Apr26+pmax&utm_source=adwords&utm_medium=ppc&hsa_acc=8968023180&hsa_cam=23619038060&hsa_grp=&hsa_ad=&hsa_src=x&hsa_tgt=&hsa_kw=&hsa_mt=&hsa_net=adwords&hsa_ver=3&gad_source=1&gad_campaignid=23619063743&gbraid=0AAAAAD7IngOjcJFgl647H4_dy9YL-2dMa&gclid=EAIaIQobChMI67XZ17TZkwMVOJVQBh2y2xqnEAAYASAAEgJAifD_BwE

It’s unproven pseudo science. Masking does not empirically exist in a more profound way for autistic diagnosed people - this is now being acknowledged by leading scientists in the field.

Sorry. Is it still compulsory for all staff without a specific diagnosis to attend the meetings in person or can they choose to attend via teams?