AIBU to wonder whether ADHD is normal and society is the issue

[LadyBeatriceBeaHiggins]

No offence intended

Discussing about Adhd with a friend who has Adhd and we wondered what if Adhd is naturally a part of being human and its the way society trys to make humans into machines that is the problem ?

so figured id open up our debate for fellow mumsnetters

She’s VERY clear this doesn’t apply to children who are clearly severely autistic.

Also worth remembering that NF has spent a long time criticising the educational system. This article basically also does this. And neoliberalism. (Which I have to keep reminding my self about via Google 🤣)

Sleep is a key issue amongst the children with adhd I teach. It’s a very real and debilitating issue. They’re clamping down on melatonin too now.

It is also true that sleep before electricity used to be totally different, split into stints. current sleep tends are socially constructed. (Bad joke….)

Some people react badly to stimulant meds. However, something like 86% of sufferers report 'significant improvement'. This is part of what inspired me to try the meds again as an adult after telling myself for years I didn't need them - looking back I was so so wrong and my life was really chaotic.

Some people have this bizarre drive to shoehorn in some narrative about it. Almost like a coping mechanism. To me it feels like saying morbid obesity is just contextual and you'd be extremely desirable in one of those African tribes that worships fat women (to the point of barely being able to stand up).

What I'm saying is that I don't believe there is any society past or present where ADHD would be anything but a handicap. At most it would be more tolerable due to the lower demands although I'm sceptical. Many sufferers would probs have been seen as dunces at school or ended up in poorhouses.

And people that have been recently diagnosed have often not really got their head around it yet.

I think neurotypical people typically adapt to the society they're living in.

I do worry about the move to "profound autism" that people like NF sometimes ponder though. Both of my children are severely and very obviously autistic, have always gone to special schools etc and yet only one of them would be considered "profound". There's this whole middle group which are just completely ignored. The one who is not "profoundly" autistic has quite limited speech, extremely unusual behaviour and will need life long care. I often wonder if it would be better to go back the other way with something like an Asperger's diagnosis (although maybe not one named after a Nazi...)

I wish those of us who are autistic, or have autistic traits, but are able to work, get married, raise children etc would just pause and consider how it might actually be better for not only the so called "severely autistic" people, but also ourselves to split the spectrum. I think if we thought about it for long enough we might realise that having a different diagnostic profile could be much better and more accurate than always being considered "high functioning" or "mild". The current system actually paradoxically forces the spectrum onto a line, because, realistically if anyone took one look at me and then my children they would naturally (and correctly) consider my difficulties "mild" and theirs "severe". If there was a different profile, like Asperger's, available again, it might be better understood and less need for all the ridiculous circular fighting that a person who is a professional, or who can raise several children etc can be as severely affected by their autism as a non-verbal doubly incontinent person.

As NF says though, it is impossible to voice this opinion without getting absolutely slated for it. Even though I am neurodivergent myself I could never say any of this publicly, it would probably seriously affect my career opportunities (I used to work in a related field).

One of the things I’ve read a few times over the last week is that the drugs work well for the majority of people who ever they are?

Hence mothers taking their child’s Ritalin and students getting it to help study.

Not to diminish their importance- I’ve seen children do so very well on it, as well as a close relative (way more than the case on that tv prog and they’re far more affected by their issues). But it’s not a good litmus “test” for the condition.

I cant tell you the number of children I work with whose carers have noticed that the child is functioning better (albeit not great) when they dont take their meds. Yet no one questions the diagnosis.

I agree with this.

Also though, many children died of childhood diseases or malnutrition in the past. Premature babies couldn’t survive as they do today

I would consider both your children to have profound autism

Im constantly slated for saying that there needs to be differences between types of autism, gradients need to be reintroduced, mild/moderate/severe/profound. Or a different condition altogether.

Why its so hard for people to discuss this I have no idea.

But others wouldn’t and there in lies the reason why splitting is never going to happen. Nobody can define mild, moderate, severe. What is severe? People will have different views. Does a learning disability or severe mental illness make it severe, are either a learning disability or mental tallness autism,both can be tied up with autism, what if one is life threatening, what if they both need life long care, how is one more severe than the other? It’s a long enough wait for an nhs diagnosis, it would take years of wrangling to pigeon hole somebody and even then they could come back with evidence to argue a diagnosis A single threshold is the only realistic way.

Having autism and ADHD, and having family members with the conditions as well, I think they are most definitely conditions and not normal variation. They cause issues with anxiety independent of society's expectations, sensory issues and limitations, issues with functioning easily day to day, and social disadvantages.

They're conditions that, if milder in presentation, can come with real benefits as well as drawbacks, especially in regards to creativity, but they're generally a double-edged sword and do make life harder in many ways.

The modern world doesn't help, but I know that myself and my family members would've still struggled both day to day, and socially, in the distant past.

Well the clinician used to define that, it was part of the diagnosis. In other countries they also have this system too. Why is it different for the UK?

I'm quite confused as to why you can't say that publicly. Can you explain?

But if we had an Asperger's back (again, not named after him, maybe a "Wing's" after Lorna Wing) it would usually be relatively easy to separate into autism and - say Wing's autism - because it wasn't all that complicated to diagnose people with Asperger's.

The reality is that with the current catch all autism diagnosis, people naturally separate into mild vs severe. They euphemise it in professional spaces, but everyone is doing it in their heads anyway. It really lacks nuance and hurts everyone because a person who 20 years ago would have received an Aspergers diagnosis and who is routinely suicidal, has bipolar, has ADHD etc definitely is high needs, but they're placed in a group with my children one of whom cannot talk, wears nappies and needs 2 adults to stop him from running at cars / rolling around on the ground. If you had high needs Asperger's/Wing's/whatever and high needs autism* *it would be much easier for everyone to understand, conceptualise and commission for!

The current system also means we have a very articulate sub-group advocating for all autistic people and often not allowing parent carers of nonverbal autistic people a chance to voice their opinions. A lot of these families feel very pushed out of the autism space and are often basically told they'd be better off in groups / spaces for learning disability rather than autism. Some families don't even say their child is autistic anymore, because ironically they don't feel people recognise this presentation of autism anymore.

Because you get shouted at that you're ableist, that there is no such thing as severe autism, that your incontinent child does not have bigger barriers than their child who got all 9s at GCSE, that you don't speak for your non-verbal child, you are denying the experiences of autistic people who are mainstream ability (can't say mild, or high functioning - which I agree with to some extent but language is becoming difficult), that do you think it's ok that autistic people die by suicide (of course not!!), and should you really be working with autistic people if you are this ableist? Etc.

My sibling has a diagnosis of Aspergers and that is their diagnosis, which they use and describe themselves as.

So I think it's the same as the fact that you are considered 'disabled' if you have a relatively mild SpLD, and likewise 'disabled ' if you have a severe condition confining you to a wheel chair - both are disabilities under the Equality Act. I've often thought people with severe physical disability must feel affronted that those with less restrictive SpLDs are described as 'disabled.'

For me it's the complete denial that a milder disability can affect a person's life much less than a more severe disability. In some online spaces it genuinely borders on delusion.

So why are those with a learning disability co morbidity allowed to keep their autism diagnosis and nobody else.

And again every autistic person without a comorbidity of autism does not fit into the Asperger’s box.

There are 6 people NHS diagnosed in my family, 3 severely autistic( without a learning disability comorbidity) using a high level of services. All 6 vary hugely in how their autism presents. Only 2 present in the male stereotypical Asperger’s way. The other 4, 3 females and a male don’t.

You can’t pigeon hole autism.

I always think this when people say modern society is the issue - a few hundred years ago the majority of people were subsistence farmers in a very rigid, hierarchical & religious society. Your working life was physical, repetitive labour & being impulsive, struggling to complete a task would have definitely been a problem. Everyone went to church on a Sunday & had to respect their social 'betters' and religious leaders. I doubt if people with ADHD or autism had an easier time of it.

There would be zero possibility of having ARFID or sensory issues unless you were rich - most people had just about enough food not to starve, and 1 or 2 sets of clothes.

I interrupt people without meaning to be rude. I have done this for years. I somehow can't work out when there's a cue to talk at the appropriate time. It's almost like anxiety takes over and I talk in an excitable way. That with other behaviours does often make me wonder if I may have ADHD. I wouldn't bother at my age seeking a diagnosis as I have reached almost 44 without any major hiccups. It's a nuisance but that's about it.

And people like me who are neither classed as severe and are nothing like our friends who do have a diagnosis of Asperger's? Where do we fit?

I was actually thinking specifically of the autistic people who don't fit into Aspergers presentation and who don't have an LD. It's like they don't exist at all. People who don't want to split the spectrum often say that "severe" or "profound" or whatever autism (because you're right, those are just arbitrary and subjective) is just LD + autism but that isn't actually true.

There are different epilepsy syndromes which help clinicians understand certain presentations, all under umbrella of epilepsy. With some forms of epilepsy people can live very normal lives, in other syndromes there are life threatening risks and life limiting comorbidities. It's relatively common in most areas of medicine and disability. I don't really understand why it is meant to be so different for autism.