to not understand MNers against neurodiversity

[UkiUki]

Inspired by another thread on here today but it’s an ongoing trend.

I’ve noticed that most, if not all of the time, when a poster suggests that a behaviour may be caused by ND, other posters jump on them and seem enraged that ‘everything is explained away with neurodiversity these days’.

There has been a lot of progress in understanding these conditions which has naturally contributed to an increase in people getting diagnosed. It is especially increasing in females as, per most medical issues, the parameters for diagnoses were created around male behaviour.

As someone currently in the latter part of the long and stressful diagnosis process, my motivation to suggest ND when I recognise certain traits in situations described is that my heart goes out to those who could flourish with a little extra understanding of how their brains work, especially children. I believe I would be a different person now if I’d had the support I needed growing up, instead of just believing I was lazy, clumsy and weird.

I feel a lot of irritation and sometimes outright anger from some posters, and the suggestion that people are using ND as an excuse somehow.

Aibu to not understand where this annoyance comes from?

🤣 is your rudeness also explained by a diagnosed illness?

Astute observation, I think!

Sorry to hear about the work problem. It sounds like the "reasonable" part of reasonable adjustments isn't quite pulling its weight ... I hope HR can figure this out for you.

@Jifmicroliquid, I appreciate your post 🤗 I agree that a bit of awareness helps everybody!

I think the world should and will evolve to reflect neurodiversity. The pace is what is uncertain and perhaps also precisely how it will evolve.

This whole post shows why people get "angry" with those that continually use ND as an excuse for their behaviour.

Posters also use ND as an excuse on many behaviour in school threads.

It minimises the issues that those with ND conditions have.

😂😂 No, but the majority of NT people have an instinctive ability to understand where other people are coming from, automatically making continual adjustments for each other.

I'll make an exception for level of alcohol or other substances ... the magic only happens if you're all under the same influence!

Well I am not a functioning member of society, some need support. Its a spectrum. I would have had much better mental heath if I had been supported as a child.

i can’t believe i have to argue that people with a disability should get a diagnosis, understanding and support in education and work. What has this country come to?

The diagnostic process does have flaws, it is based on parental report as much as professional observations. We are beginning to understand the ASD has genetic components, and hopefully one day we can establish a more concrete way of testing, so children can access support early, when we know that the intervention is most effective in supporting their development, access to appropriate education.

I know several families who have had to battle so hard for a diagnosis, through long waits and doubters and SEN panels etc. Of course, in person assessments would still be needed to establish the right support for that child.

When I got a diagnosis of arthritis by blood test, no one suggested that it might not be correct, I wasn't called lazy for getting tired more easily, it was just accepted, despite no one seeing anything. My boss didn't ask for any evidence to grant me to support I needed.
A colleague who needed minor adjustments due to her ASD was asked to provide lengthy reports and evidence, if there was a concrete test then hopefully there would be fewer struggles.

Posters also use ND as an excuse on many behaviour in school threads. It minimises the issues that those with ND conditions have.

It’s not always an “excuse” - dysregulated autistic children can present with poor impulse control, lashing out, inability to self-regulate. I’ve been the mum explaining my son’s actions in this way: because it’s true, DS’ classic autism is the one and only reason he is “badly behaved”. Too bad if you don’t believe me, and tbh it’s particularly disappointing if you are yourself ND and have (presumably) your own, albeit different, challenges.

I actually think the exact opposite of your last sentence. The monopolization of the debate (including on this thread) by those whose ND has a milder impact on their life, and who are articulate and “functioning”, completely obscures the wider picture of autism as a lifelong, serious disability, and many diagnosed people are in no position to advocate for better treatment, because they are non-verbal or too severely impacted to explain the consequences for them of (say) being dismissed as “devil spawn” (as one delightful parent called my then 5-yo DS) during childhood.

It seems middle-class folk who pay a few grand to be told why they’re “different” simultaneously don’t want to admit that similar “differences” cause challenging behaviour in children, and would rather blame the parents.

Multiple ways of being may lead to the same care needs. I was recently at a pick up in Next. The woman next to me had her adult autistic son with her. She said 'it's busy, go and pace over there' and off he went and she continued on her phone. Meanwhile, I had to leave my higher functioning adult autistic son at home because his anxiety prevents him leaving the house so could continue on my phone. We both may have been doing online grocery shopping or grabbing down time.

We are both full time carers to autistic adults unable to cope with the NT world.

Maybe increased support will mean greater ability to cope and reduce the amount of mental illness but will do little to increase independence of those in severe need or reduce the need for care.

I think we need to rethink 'severity' and think about the level of care needed to support the needs of the disabled person. Whether that care is available outside the family via special schools or social services or whether support is provided by family carers.

I have to do PIP review every 3 years. I can't say my DS is still autistic (no miracle yet) and I'm still full time carer but have to provide recent evidence and fill in a pages long report. Then the DWP are too busy to respond. Last time they never responded but just continued paying PIP until the next review. I submitted in February but heard nothing back and don't expect to.

@PocketSand what do you mean rethink the level of severity.
There is a difference caring for an adult who can never be left alone. It is very restricting.

I understand that a lot of posters have DC at school and are fixated on this stage.

Mostly parents of NT kids. Most will be OK with minimal support.

Parents of ND kids are in a much more precarious position. Maybe they will be OK. Maybe they will crash and burn. Maybe they'll get an ECHP. Maybe they'll get special school. Maybe they'll get DLA/PIP etc. it's never ending. Even if they get to uni it's all about DSA. And then will they get a job when they graduate?

And there is so much parental input at each stage.

@CandyMaker do you mean an adult that can't be left alone due to medical needs?

@PocketSand some parents don't have the maybes as it's a taken eg my ds had high dla care from two years old and high dla mobility from three years old. This is awarded until he has to transfer to pip and I imagine he will just get both at high rate. This is without fighting, tribunal or reconsideration etc. He had a statement (prior to ehcp which he now has) at three years old and was diagnosed at two after a wait he shouldn't have had. I would say he has severe/profound autism. University will never be on the cards or work- this isn't a maybe, it's a very sad guarantee. I wish there was question over whether or not because that would mean a better prognosis.

His needs are vastly different to those who have severe anxiety or mental health needs as well as their autism.

The change in discussion around severity is ongoing with the general consensus that those with profound needs should be separated from those with lesser autism needs. See links above.

Whether the needs are medical or social it is simply not possible for one person to be always present. If a DC needs 24 hour supervision the state has to supply. Family carers cannot supply this level of care.

But family carers do what ever try can and then a little bit more to keep their loved ones at home even if their working their arses off.

Indeed children like yours and mine, are not even in that same ball park
Tbh I wouldn't care if my son lost the autism diagnosis ad it's completely meaningless
He's severely disabled, non verbal will never live independently, cognitively around 2/3 years of age at fourteen.

I know many families that provide this level of care, it's awful. That is the reality though, some peoples autism is that severe and is a lot more than social needs. We will do it until we physically can't. We get four hours respite during term time and more but not enough during holidays. Ds is provided with 2 pa's to take him out as that is what the pa's require for safeguarding. Family/ parent carers have to manage anyway they can. Ds requires constant supervision at all times that he is awake. This is part of the dla criteria for smi.

Autism can be completely debilitating for some people and is a very serious disability. No other group of people who are so disabled have to contend with their dx being questioned or watered down to accomodate people who see their disability as a difference to be embraced.

Sorry @Perzival I don't agree. It is always a mixed blessing you don't have to fight.

Yes DS2 was late diagnosed but selectively mute from 6 years old. Tribunal ordered specialist school but it failed. He was actively suicidal for years. Do you know what it is like to be on suicide watch for your own child for years?

@x2boys I completely agree the autism diagnosis has lost all meaning as it represents so many different presentations, it's sort of become normal to be on the spectrum I can't imagine ever fighting for a diagnosis or spending thousands of pounds on one as some people do.

I mean an adult that can not be left alone as they are not safe to leave alone. This is the case with adults with profound autism. They need constant supervision.

Yep my son got the diagnosis at three we were pushed towards special school ( which in hindsight was the correct decision) and the first time I applied for DLA he got a 13 year award

Yeah sorry for competing / it's crap for you and it's crap for me - no point comparing the crap.

I get no respite. I have been 24/7 carer for over a decade now and I am burnt out.

@PocketSand you're comparing apples and oranges though that's the point.

I imagine it's worse than heartbreaking but in the same way I can only imagine your situation you can only imagine mine. Your child may (hopefully) be in this situation for a period of his life and you can hope that with the correct support he will come through the other side. For parents like me that will never happen. You will never know what that is like.

As an aside I do know what it is like to have to watch someone for their safety all the time because they could hurt themselves.

What a ridiculous comment only 1 in a 100 children are diagnosed with autism. It’s night on impossible to get one and it is most certainly in no way “normal” to be on the spectrum.

My point is the diagnosis is meaningless i have a tough life as do you our children have very different but serious needs but it's like Trying to compare a giraffe with a rabbit.

@PocketSand I replied as you must have replied too, I'm sorry my post is strongly worded. It is crap for all of us.