To be angry at the ableism here on MN

[QuitChewingMyPlectrum]

I don't see any threads saying cancer is over diagnosed. Or used as an excuse for something.
More and more ableism is showing up here targeting the ADHD and autistic community and I'm pig sick of it.
Overdiagnosis conversations involving those who have no lived experience (your kids don't count, sorry) suck.
You have ZERO idea what it's like to be us.
And you say WE lack empathy.

^This. My DB was diagnosed with autism in his 50s, a couple of years ago. I don’t believe it. I remember him as a little boy, sociable with lots of friends. His issues didn’t manifest themselves until he was in adolescence.

Whereas he was sexually abused, as were my DSis and I. We’ve both been diagnosed with complex PTSD, so it’s surely reasonable to suppose that my DB has it too.

But he remembers nothing about his childhood so he’s never been diagnosed like we have. He’s badly damaged, whatever his diagnosis, and can’t function as an adult.

Hi Galiana

Unless I'm misunderstanding you, you are totally wrong about this. Autism is present from birth, the brain is literally wired differently to NT's. Autism-like symptoms brought on by trauma is NOT autism, it is trauma.

This not true. DD1 was never diagnosed as having autism; and she had countless assessments by NHS and independent SALTs, OTs, EPS and a consultant child psychiatrist. One SALT told me, she knew DD had a congenital brain abnormality because she was so sociable for a child with a developmental language disorder.

She has a neuro-degenerative disorder and now has autistic traits, including hand flapping. Nobody has assessed her cognitively recently, so I don’t know to what extent; but she is presenting with PDA!

How does any of that refute what I wrote? Your daughter has not been diagnosed as autistic.

How does any of that refute what I wrote? Your daughter has not been diagnosed as autistic.

All the professionals in the specialist centre, where she lives, assumed she was, when she went to live there. So, they diagnosed her as autistic.

I'm very sorry to hear of you and your siblings' experiences.

One of the things that makes this difficult is that a lot of us have a poor understanding of what autism actually is, or of the range of presentations.

Even professionals will sometimes lapse into assuming that if a child can hold eye contact or is sociable, then autism can probably be ruled out. This is incorrect. Plenty of autistic kids are socially-oriented and just about manage until adolescence, when social relationships become more complex, and they are required to manage them without adult supervision, at which point their differences in social understanding and communications become very much more visible and problematic.

What? Your last post stated 'DD1 was never diagnosed as having autism'. I really don't get the point you are trying to make. Autism is a lifelong condition, if it is not present at birth it is not autism.

Yep, autism is from birth.

Agree op. Ignorance is rife

What? Your last post stated 'DD1 was never diagnosed as having autism'. I really don't get the point you are trying to make. Autism is a lifelong condition, if it is not present at birth it is not autism.

DD was extensively assessed in the specialist education system and nobody ever thought she had autism.

The neurodegenerative syndrome reared its ugly head and she suffered massive cognitive deterioration. As an adult she went to live in a specialist centre. They just assumed she had autism and it was in the paperwork they produced. I didn’t go round asking who made that diagnosis - the SALT department, the clinical psychologist or the consultant neuro-psychiatrist.

That is the nature of neurodegeneration - changes over time.

I don’t know how you can state categorically autism is only from birth; as if the areas of the brain responsible for the symptoms of autism are immune from the degeneration which affects areas like memory, IQ, language, aggression, irritability, walking and the development of psychosis?

They also don’t seem to know much about gene penetrance or expression? DD has 2 syndromes interacting. They don’t know why one of them is pathogenic in her; but is asymptomatic in most people with it. They can’t tell us, as carriers of one of them, how much the gene variant affects us; other than to say it depends on the penetrance.

Most autism is inherited or genetic and present from birth, though obviously the symptoms may only arise and be recognised later.

Autism can also be caused by brain injury - the one we see most is after severe bacterial meningitis in a baby, but in some neurodegenerative conditions as well like Rett's disease. It's probably a slightly different "type" of autism.

Sorry - Rett syndrome.

As someone with no experience of autism with myself or my family

Is a meltdown like an epileptic shock. As in it's not controllable?

One thing that strikes me is that there is currently a thread where a woman with ADHD/anxiety is complaining about a financial circumstance and says she is unemployed. The OP was inundated with responses about how autism and ADHD do not prevent employment and she should get a job. My question would be how difficult is it for those with neurological conditions to gain employment? I would hazard a guess that the symptoms of ADHD may not be conducive to work performance so what measures can be ok in place to support those with neurological disorders to get into the work place?

My concern is that there are many (particularly boys) that are being diagnosed for laudable reasons with neurological conditions that will at a certain point have to gain employment and show their motivation and suitability to work to an employer. Stating you have ADHD will I fear in some circumstances may have a negative response from an employer that values attention to detail or attention for long periods of time. If the sufferer has a poor academic record where are the employers that are going to be providing these jobs. I think this is where the real 'ableism' starts.

I can see a proportion of children being supported through childhood but having to face a harsh reality when it comes to adulthood and the workplace. I think one thing that has to be avoided given human nature is that ADHD/autism sufferers who are poor do not get labelled as the next 'benefits street' job with a new generation of Jeremy Kyle lovers baying at these people to get off their backsides and get a job.

put

"I don’t know how you can state categorically autism is only from birth..." I can say it because it is part of the definition of autism so I will share this again: "Autism spectrum disorder (ASD), usually called autism, is something you’re born with..." Autism spectrum disorder (ASD) | NHS inform"

The fact that your daughter was assessed many times and still diagnosed with autism until later life does not mean it wasn't always present. If she does have autism and it's not a misdiagnosis, it was always present. I saw 4 different psychiatrists between the ages of 15 and 20, none of them diagnosed my autism but I have always been autistic.

Wales also has an older population compared to the rest of the UK, and greater levels of poverty, so more ill health perhaps shouldn't be surprising.

Yes, and a 'quick' diagnosis doesn't mean the criteria aren't met.

DS was diagnosed quickly once we saw someone on the ND pathway, but the school and other agencies already involved had sent a lot of reports and evidence - and in fact worked hard to get him bumped up the waiting list. The doctor we saw said that a lot of it was things she would have asked for after the initial appointment, but it was all already there and he clearly met the criteria.

Apologies if it's already been mentioned but I do have an issue with the neurodiversity movement trying to erase the experience of nonverbal autistic adults with high support needs. They say there's no such thing as "severe" autism but after working in a high secure setting for autistic adults, I just can't agree. I've seen comments like, "autism is only a disability because we have to live in a neurotypical world". This might apply to you but it's not universal for all autistic individuals. Same as, "all ABA is abuse" mentality. Some autistic people CANNOT communicate at all.

I’m ND always worked or studied full time partly as I have no other option - the measures that have been into place in my current job to support me are the ability to WFH every single day and work flexible hours as well as other in-work adjustments. I’m fortunate to have this job but have had some awful uncompromising jobs in the past.

Some jobs and workplaces are less suitable for me and other ND people. More needs to be done to make more employers be more inclusive but progress has definitely been made.

I have a friend whose child father hasn’t ever worked, since she left him about 25 years ago. he is vague about his disability but we think he has been awarded it either claiming substance abuse or depression. She has her own mental health issues stemming from childhood trauma but works part-time as well as being primary carer for her sons but chooses to set a better example for her kids than the father and also she knows long term it won’t help her to sign up to lifetime on benefits which is what much of her family did.

Her ex is a shell of what he used to be like and has found a partner with kids who has the same lifestyle as him. Together they just sit in and drink the day away.

Sometimes not working feels like the easier option and sometimes it’s necessary to take a break, but I don’t think not working long term is benefiting him in the long term.

To be clear : I’m aware some ND people genuinely cannot work but for some it’s like they’ve fallen into a trap which eventually drains them of their skills and confidence. We need to help signpost people to suitable work and make sure more employers are flexible and amenable to making reasonable adjustments.

But they don't have more ill health, well, at least not more diagnosed disabilities, Wales has below the European average number of disabled people. I was surmising that it might down to health cuts leading to less diagnoses and early death of the disabled.

@Anewnamea

Thanks for the post and I am glad you have a good employer!

You come across as very eloquent but I fear that those that I know with ADHD/ASD are not doing well academically so they are facing an extra challenge when it comes to employment.

I just wonder that the fact that only around 20% of ASD/ADHD sufferers in employment means parents should give consideration to life chances when pursuing a diagnostic route?

I

@NoMor

See regarding infantile spasms in particular:

https://www.spectrumnews.org/news/the-link-between-epilepsy-and-autism-explained/

Social communication can improve after epilepsy surgery. Why would it do that, unless seizures were affecting social communication?

@Anewnamea

The trap you refer to could easily apply to those from poor backgrounds in my locality.

The ultimate life chances of ADHD/ASD children may very well be class dependent.

I just wonder that the fact that only around 20% of ASD/ADHD sufferers in employment means parents should give consideration to life chances when pursuing a diagnostic route?

The problems can show up in employment whether someone has the label or not? For instance, afaik individuals with ADHD can have a poor employment history, because they are impulsive and just walk out of a job, when something has upset them.

Medication can aid concentration at work and reduce the impulsivity or emotional volatility.