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.

It feels to me as if a vast amount of people with a whole range of symptoms/behaviours are all lumped in together under one umbrella. People who, despite an ASD diagnosis, are highly functional with those whose autism is profound.
IIRC, Asperger's Syndrome was 'discontinued' because Dr. Asperger was a Nazi and the term ASD was brought in to cover this. I wonder if there is still a need for a less general classification as it seems as though those with a very profound presentation are at risk of being taken less seriously (as in 'Oh, everyone has that these days...' or 'Well plenty of people with autism still manage to work...) whilst those who are highly functioning risk being dismissed ('Oh, she won't amount to much, she's autistic...).
Then there are all the mothers (because it's always the women) who are told that autism is a 'superpower' whilst cleaning shit off the walls for the fifth night running.
I'm not sure that the term ASD itself does anyone any favours really.

My adult autism assessment last year consisted of lots of questionnaires, an ADOS assessment appointment with a occupational therapist and a clinical psychologist. A separate appointment for my husband to answer questions without me there. And then finally a feedback session. This was private not NHS.

YANBU

Yes that's why it is described as a spectrum.

The diagnostic criteria require evidence of persistent deficits in three areas and significant enough challenges to require support.

Mental-health co-morbidities are very common, as is ADHD.

Even without intellectual disabilities this can result in 'profound' disabilities including not being able to participate in everyday life things like employment.

I don't disagree with any of your points.

We were very lucky and only waited approx 3 - 4 months for each from referral to diagnosis. Its definitely a postcode lottery.

DD2's ADHD/ASD twice yearly private one to one appointments last one hour, so not only did she have a thorough assessment at the start but she has very thorough check ups each time.

I think the only time I've spent a whole hour with a medical professional in the NHS is when I was having surgery!

It's just lovely for her to speak to a specialist who completely understands her and I wish everyone could have this.

This is precisely what I don't understand. When I was a child, 50 years ago, children simply did not punch, hit or spit at adults.

One of DD’s care workers told me, her first job in this country was to look after two adults with SLD, who had been dropped off at about age 3, at the local lunatic asylum, which in its heyday housed 3,000 people. It was closed down and its residents were put in supported living in the community - in their case, a house nearby.

How many people were put in institutions in those days, who would now be in mainstream schools?

No, Asperger's was discontinued because the distinction between autism and Asperger's was arbitrary (to do with speech delay - no speech delay= Asperger's, speech delay = autism) and because people interpreted Asperger's to mean "mild autism", which it isn't.

Whoever asked - no I don't do adult assessment.

I have CPTSD and the psychologist who diagnosed me initially refused to do an autism assessment because of the trauma.

I then got started on my special interest and couldn't stop talking about it and she rethought and agreed to assess me for autism too. I did all the rating scales and then had a further 6 sessions going through autism stuff and I was found to be autistic too. There is an overlap on some areas of PTSD and autism but also some differences.

I know people who have PTSD who have been totally refused an autism assessment without even meeting them.

It is possible for people who have had a trauma history to also be autistic, in fact trauma is really common in autistic people because of bullying and higher levels of abuse.

Attention deficit isn't about inability to pay attention Ookkkaaay.I think you are the one embarrassing yourself!

Gingerkittykat

Absolutely my kids and I have both. My children were diagnosed as autistic whilst suffering from trauma. A skilled diagnostician will be well able to correctly diagnosis somebody with autism who is struggling with trauma Their autism has lead to extremely traumatic experiences that have impacted all of us.

I think some parents of NT kids will observe an ND child with challenging behaviours (violence, disobedience etc) and like to think that their child doesn’t have these issues because they can be bothered to PARENT, they are proactive and instil firm clear boundaries and utilise proper discipline techniques. The ‘misbehaving’ child is a perfect example of their superior parenting.

So they don’t want to hear if that child is autistic and all those techniques have zero effect, and their NT kids are just easier and they wouldn’t do a better job than the other parent and they are not superior in any way. So then you get all people spouting about ‘Well I just see autism/adhd used as an excuse by lazy parents !’

I hear what you're saying, and the institutionalisation of people was so very wrong.

I was heavily involved when Community Care (Care in the Community) legislation was implemented. Particularly in sourcing alternative living situations for those being discharged from NHS care.

The vast, vast majority of residents had either a diagnosis of Down Syndrome, Cerebral Palsy or physical disabilities. Those people were relocated to the type of home situation you describe - houses in local communities with on-site support (sheltered housing situation) to allow them to live as independent life as they were (individually) able. Some were allocated their own tenancies (or shared tenancies) with care workers visiting multiple times per day and sometimes someone sleeping over too. We did our absolute best to meet the individual's needs/capabilities in discussion with them and their families.

The minority of residents had diagnoses of Autism. Only a handful of those people were assessed as being capable (with substantial support) of living in even a semi-independent situation. The majority (of the minority) went to a combination of private and NHS residential units where there was no expectation of independent living. Those units were (are) much smaller, much more homely than the 'asylums' in which they previously lived but retain a 'structured' ambience. Interestingly, families (where they were still involved) were very supportive of ongoing full-time care for their loved one where it was suggested to them.

I'll be honest, I have zero idea of how many of those people would be in mainstream education these days. I suspect those with Cerebral Palsy or physical disabilities would definitely be in mainstream school now without question. No-one seems to mention Down Syndrome pupils in my social sphere, so I imagine those pupils work quietly/dilligently and are not disruptive. There is, though. a lot of anecdotal evidence of pupils with Autism/ADD/ADHD in mainstream classes. Unfortunately, usually that anecdata is negative in terms of disruption to fellow pupils and the trauma experienced by those pupils when the pupil with Autism etc. has multiple meltdowns on a daily basis. I'm sure, though, many of the pupils with these diagnoses are 'quiet' in their symptoms and battle through just as they would have (back in the day) without the diagnosis but with the same feelings/anxieties/behaviours/triggers.

FWIW, I'm sad I grew up in a era when people with disabilities were, for the most part, hidden away and recognise as a society we failed those people.

However, I'll be honest, I'm also grateful that I was not traumatised by witnessing multiple violent/emotionally distressing meltdowns on a daily basis. The most 'unusual' event I/we witnessed were fellow pupils who had an accident being despatched to the school nurse, or someone crying because they'd fallen out with their best friend.

For me, that's the massively under-discussed issue - the trauma/impact on children witnessing these events - teachers/fellow pupils being punched, kicked, spat on, being hit with flying objects or the deep distress of the affected pupil - in someone who has been triggered into a meltdown due to noise/lights/not wanting to take off their jumper/sitting in their own excrement for too long etc.

Are we at risk of creating a generation of people with PTSD from being required (without option/discussion/agency) to witness these events? Living on their nerves waiting on the next meltdown and having zero inclination when/how that will occur? Having no idea if they will be in the physical firing line, receive a blow to the head or be hit with a flying chair? Isn't that how victims/the children of DV live?

Of course, all of that, is before we look at the impact on their education due to so much time lost with the teacher doing their best to mitigate/handle the meltdowns. I often wonder if there is correlation between declining mainstream educational standards and the time teachers have to spend handling pupils who are ND?

I don't know the answers to any of it, but I certainly hope those with the appropriate qualifications/research ability are looking at the situation with a wide-angled lens and not focused solely on what is best for the ND child/ren.

@Trez1510 I desperately want my DS to go to a special school but it’s so, so difficult to get a place.

The answer would be more funding for these types of schools.

so many parents aren’t happy with their child being in mainstream school and their child isn’t coping in mainstream, but no place available.

then the consequence is often other children in the class also suffering

I get what you're saying and obviously it's not good for people to take medications they don't need but it's not a bad thing to raise the possibility? It's far worse for a child who is ND to be written off as bad or naughty or difficult or even "arrogant" (that was my label from my dad for so long) and not get the help they need. The worse case scenario is that someone who doesn't need meds gets an assessment which proves they aren't ND. Or sometimes it's another condition which mimics ADHD or AsD, like BPD (obviously there won't be a diagnosis of that in children or young teens) or complex trauma.

I certainly hope those with the appropriate qualifications/research ability are looking at the situation with a wide-angled lens and not focused solely on what is best for the ND child/ren

Trust me nobody is looking at what is best for ND children.

The lack of proper support as well as special school places, leaving ND children in mainstream schools is everything to do with money.

I honestly think that lack of funding is a huge problem.

@FeelWorthlessAndAshamed

ITA. For all the talk about over-diagnosis and medication, I wonder how many ND women in particular, go undiagnosed for decades and end up with a MH label anyway instead - such as depression, anxiety, BPD….because of the trauma of struggling to cope? There’s a greater stigma around the label of BPD from what I hear, than autism or ADHD!

People see this problem as black or white, instead of the shades of grey?

I think there are many people who could work, who don't. I also think many employers could adapt who don't.

I have an inconsequential ND and was amazed to see that people claimed their lives were ruined because they don't have this ability. You adapt.

@Trez1510 Autistic children only have meltdowns when they're extremely overwhelmed, a school would have to be pretty bloody dire if they are triggering multiple ones every day! You say you would be traumatised watching them, imagine what they'd be putting the autistic child through!

Your fictional scenarios show quite a lot of ignorance and prejudice. Most autistic children in mainstream school are just like me and my children. I went to the local primary in the 1980s, was well behaved, no meltdowns. Passed my 11+ went to grammar school. Finished school with lots of qualifications and an unblemished school record. My children much the same. They are all quiet, studious, thoughtful, calm rule followers, it was always the poorly behaved NT children that caused all the problems!

I wonder how much time is lost to teachers dealing with tantrums, bullying and general rule breaking of NT children?

I have recently been diagnosed as an adult with ASD and I haven’t shared it with anybody, partly because I think I won’t be believed because of people thinking it’s over diagnosed, and partly because I don’t want others to perceive me as weird. I’m working on that. I sought diagnosis because I really struggle to hold down a job due to frequently misunderstanding what people want me to do or being misunderstood. I’ve been lucky in that I can freelance in my field so I do short bursts with different people and moved to an area where my skills are rare so I am not short of work even if I mess up with one client. My work is always a very high standard, it’s the communication that is the problem. It has taken a terrible toll on my mental
health, and I have been aware for a long time that I don’t know how to act like
other people and have to pretend. At home it’s a lot more obvious - I stim and have a lot of repetitive behaviours, I have intense special interests, but I’m able to mask those to an extent when I’m out. I’m very high masking and was able to mostly hold it together until I had kids when I started having more sensory overwhelm issues. It’s only recently I realised how much I internalised the feeling that I was somehow wrong, and the extent that has really
affected how I see myself and perceive my own worth. Also how much I have had to hide and do to remain functional - moving to a completely new place for example, and constantly moderating myself in conversations.

I’m female. My girls are both pretty young but I can see traits in both of them - my youngest has met the threshold for a referral for assessment. I don’t want them
to go through what I did. I continuously beat myself up mentally pre diagnosis wondering why I couldn’t just do what everybody else could do - I’m highly skilled in a particular area which I work in but struggle to manage other areas such as admin, and keeping track of objects. But I don’t think I would be believed if I told anybody because of a lot of preconceptions and the idea of overdiagnosis. I do intend to tell my regular clients when I get the courage to.

• faculties

Not necessarily dire. Often it's just simply a completely inappropriate setting. So often the case for autistic children without learning disabilities who are expected to cope in mainstream.

Yes , definitely a greater stigma over the label BPD, I'm someone with that diagnosis. Been in long term psych treatment for years. Diagnosed back in the day before DBT was widely available and when antipsychotics, old school ones were just thrown at women like me. It is, along with schizophrenia and NPD, the most misunderstood ND condition. In my case the label fits pretty well but I do suspect the fact that it's become a more common diagnosis when in matter of fact Cluster B diagnose s affect only about 2% -3% of the population,is due to autistic women being misdiagnosed with it . I know BPD presents in so many diverse ways, it is a broad church, as it were, but I'm sceptical of the way cases of BPD diagnosis are mushrooming, it's not a common disorder really, but ASD is common.