To think autism gets worse with each generation

[eastereggg]

Genuine question.

Why does it seem that autism gets worse with each generation?

Example: a mother is a late diagnosed autistic but her child is very clearly autistic and displays much more severe characteristics than she did. The grandmother would probably be diagnosed autistic today as well.

There seems to be a recurring pattern that I'm seeing where autism is getting more severe with each generation. Is there an explanation for this?

@Daisychainsandglitter I expect she has too. I hope you feel better soon.

I know it really impacts her and I'm becoming increasingly concerned about her mental health recently as she is going into puberty.
Next week will be better once she is back into routine at school.
Just bad timing that we are all ill (with the exception of her) and are very much struggling with the lack of sleep. 😴

My husband is autistic. However, he was born and brought up in the 1960s, when the educational approach was much closer to 'normalisation' than is is today. That meant he learnt to sit on his hands to prevent himself from stimming, and he learnt that being bullied was the consequence of being 'strange'. He left school early and worked on farms, and later as a caretaker for municipal buildings. The solitary nature of the jobs and the routine really helped him. By this time he had found out it was a lot easier to socialise when he was drunk, so he spent a lot of his time in the pub.

We met and married when he could no longer work (anxiety and depression are close companions of masking). I knew nothing about autism, but there was a sweetness and vulnerability about my husband that I loved. Our eldest son was born.

It was obvious from the age of two that our son was developing atypically. He had speech and language therapy, but needed this on a one to one basis. He had one to one support throughout pre-school and school. He was diagnosed with autism when he was seven. After speaking to my mother in law, it became obvious that my husband had similar developmental problems in his early and primary years, but many of these were ignored or made light of. My husband was considered 'lazy' because he had toilet accidents frequently in school, and 'shy' because he did not talk very well or very frequently. My husband received his diagnosis in his early fifties.

If we compare my husband's and my son's lives superficially, it would seem that my son is much more 'severely' autistic because he has needed significant support from an early age. However, this would not be true. My husband needed the support but did not get it. He had the same needs, but these were not recognised.

My husband is now in a care home due to the effects of his very significant mental illness (late onset schizophrenia) which may or may not have been impacted by years of trying to conform to neurotypical expectations.

Yet, there are other factors. My husband and son have always been extremely anxious and prone to meltdowns and shutdowns. This means that the effects of the home environment and heritable (learnt) behaviours need to be considered when I reflect on my eldest son's development. There may also be a genetic and heritable component to mental illness, and my eldest spent three years in residential care as an adult due to the effects of his mental illnesses rather than autism. He is now in supported living. My youngest son also has serious mental health difficulties and is also awaiting assessment for autism/ADHD. I am sure there is a genetic component, but I also think the environment and his negative experience at school and possibly at home have impacted the presentation of his behaviours.

I am not suggesting that the situation in my family is the norm, but I think genetics, environment and the co-occurrence of other conditions and illnesses all play a part in terms of how 'severely' an individual appears to be affected.

It isn't getting worse. It's just better understood. And people aren't afraid to have ASD anymore in terms of acceptance. We also no longer lock people in homes for being autistic. I think much was hidden by individuals or their families. I also think that people with ASD are now having families of their own too.

I have lots of friends whose kids have ASD - and now have realised they probably have it as well with some getting formal diagnoses.

did you mean causal?

The obvious answer is the demands modern life & schooling place on people exacerbates autism. Particularly from a sensory perspective - everything is louder, brighter, faster, more intense, more overwhelming than it was 30 years ago.

I found your post really moving and interesting @tippytoesy.

I am married to someone who sounds a little similar and I would guess his brother and dad are ND too.

What has protected them in life is that their special interests were all socially acceptable and led them to jobs and friends and a lifestyle.

So two engineers and a vicar. All with significant, technical hobbies involving machines.

I hope my daughter (the only diagnosed one) will find her "thing" too. Diagnosis has been very positive for her and for us and particularly for DH who feels validated by eventually (in his 50s!) knowing what is different.

Also bear in mind that the autism diagnostic criteria have been broadened considerably.

Children are diagnosed today who would not have been considered to meet the threshhold in the past. There is children in both my DC classes at school who are diagnosed with autism. No way would either have been diagnosed 30 years ago. They would have been considered "not bad enough", but also in a lower demand, more predictable, calmer environment probably wouldn't need to stim or end up having meltdowns as much.

I am one of those children, well 40 years ago, not 30. I would probably be diagnosed today as a child. I was fucking weird. Selective mute. Silent. Awkward. And most of all absolutely fucking terrified of doing it 'wrong'. I struggled my way through primary and I spent the majority of my high school years wandering about the city because I wasn't able to manage school so just truanted.

A lot of people think changes in the diagnostic criteria has been a negative move but it's stopped my DD from living the lonely, scary life I had.

As a young adult i turned to alcohol to get me through, i was misdiagnosed multiple times, i was incorrectly medicated and the expectations placed upon me were way beyond my ability.

I have complex PTSD from the trauma of going through it undiagnosed and misunderstood

The understanding we have now and the difference in diagnosis could have saved me.

Also people died younger or dc didn't survive

Thank you. I'd written a lengthy response to this poster but deleted it out of frustration but this is pretty succinct.

I compared my non-verbal, visible stimming cousin who lives in his own flat supported externally, never had a relationship never suffered any sort of abuse to me, very verbal, don't stim, been abused in every relationship in every possible way, cannot live unsupported, can't even shower without it taking a long time to prepare myself for the hell that is showering or it taking forever in the shower once I'm there because it's a sensory nightmare and highly distressing. I live in fear of my grandmother passing away as she has been a constant source of support in my life that everytime I have tried to live independently and failed she has handled that trauma in ways she did not sign up for and she's done so without complaint.

If we judge severity by neurotypical standards like that poster then yeah sure my cousin has "more severe" autism, but he's unbothered and supported, he understands his limitations, but has never had to work and fight the middle management for accomodations that they push back for, and he's never had to find ways to get out 40k worth of debt that manipulative exes have taken advantage of with, and he hasn't ever had CPTSD coined at him in any way shape or form.

If you look at severity based on how it impacts the individual, in my comparison I definitely feel that I am more significantly impacted. I'm being investigated for autoimmune conditions because of the constant stress of fighting for my needs to be met in every professional setting, in every relationship, I've been through more therapy than I dare to try and count and many of it has been detrimental as it isn't set up for neurodivergents, I've self harmed and planned my own death and reached rock bottom and cried to receptionists, doctors and nurses, crisis teams and samaritans more than any one else I know because I simply just do now know why I can act normal but I am not normal and I just can't do things normally consistently. I've behaved autistically and been held to account of not behaving in a neurotypical way and reprimanded instead of met with compassion. I've had friends and family walk away or hang up the phone because of my tone being off, or because they've interpreted something in my words that wasn't actually said. I've been brought into disciplinaries in work because once again I have said things or asked clarifying questions to gain context of a situation and people have misinterpreted what I have said, and had the fear of God put into me that I might lose my only source of income and ruin not only my life but my partners life by not suddenly being financially valuable but seeing a pattern in how employers treat me and knowing it is going to happen again and again.

I do of course know that some people with autism will never live any life with any sort of independence or autonomy, will never read or write, will never have a romantic relationship, will never work, will never be able to express an interest in something with ease and I hope anyone reading this does not assume this is a race to the bottom, but I'm just replying to this extremely valid point the quoted poster has made in that surely severity is a very personal thing and just because someone's struggles are different to how you perceive them, it doesn't make them any less severe and shouldn't be judged based on how neurotypical someone is.

Little experience but I do know two mildly autistic young adults who married and had a child. She is non verbal and sleeps very little. They both work and life is very hard for them.

No such thing as "mild Autism"

As I said, I only know these people through work so I don't have experience of it personally or use the correct terms. Put it this way, they work but have lesser issues than their daughter who is non verbal, goes to SEN school and takes medication before bed or she doesn't sleep. So the parents autism is "less life impacting" than their child's. 🤔

Still doesn't make it "mild" though.

Still doesn't make it "mild" though.

Well if you are going to remark the level of impact mild, moderate and severe (does anyone actually do that?) then I think someone does fit in “mild” don’t they?
All nonsense if you can’t describe the different impacts for fear someone will feel unrecognised or minimised.

💐 thank you for sharing

But you are minimising someone's Autism by saying it's mild. What you really mean is, it affects you mildly. Chances are you really have no idea how they're really affected

Given how much it varies and the various difficulties, you really can't say it's mild.

But nobody can have mild autism. Traits need to significantly impact life to get a diagnosis.

Because 70-100+ years ago, all the children and adults with very severe, high care needs autism would have been insitutionalised. They'd have rarely been seen "out and about", so unless you have someone in your family or immediate social circle that you knew of, you could well have never known they existed.

That isn't necessarily true. My uncle married, had kids, had a very high level engineering job. The pressure of all of this broke him. He progressed from social anxiety to depression, panic attacks and a full breakdown in 40s. Rarely left the house again and took his own life in his 50s despite autism diagnosis and intensive mental health support.

This is why the low/high support needs terms are damaging. He would have been deemed high functioning but he wasn't. He was just high masking.

I've only realised I'm likely AuDHD since my kids were diagnosed. I'm now in my 40s and I'm definitely far more sensitive to a lot of things than I used to be, especially noise and busy places. I gather perimenopause often hugely exacerbates autism which is a worry.

Like my great aunt. By all accounts, she was very much like me - not high support needs as anybody here would see it, but still struggled. One day, some time in the 1920s, she had a meltdown in a public crowd as a teenager.

She was institutionalised. Years of electro-shock "therapy", drugs and at some point a lobotomy. She spent the last 50 years of her life stood at a window in the asylum, screaming. She died in the early 90s.

A life completely wasted, all because of one meltdown...and much more recent than people really want to admit.

I am “that poster” you are referring to and I was diagnosed as autistic as a child. So I’m not a neurotypical nor do I have an neurotypical opinion and I can’t always pass as one either. you are doing exactly what you accused me of and minimising my difficulties. The irony.
I’m aware autism is a spectrum. I have a mix of high functioning and low functioning symptoms. I can mask at times. I still don’t consider myself to be as autistic as someone who can’t function at all and can never mask or who has more severe symptoms over all in comparison to mine

But you weren't just comparing them to you. You were holding autistic people to a standard based on how neurotypical they can behave.

For one, you're either autistic or you're not, two, some autistic people have more struggles than others, and they may be sporadic or lifelong, there will always be some people who are always high needs and need support but judging how neurotypical they are able to pretend to be is not a good measure of "how autistic someone is".

There's absolutely nothing wrong with acknowledging that some people have been and will always be high needs, dependent autistic people with or without comorbid learning disabilities or other disabilities, and that doesn't match your experience. Identifying support needs is clinically beneficial. Basing ones diagnosis on how neurotypical they can pretend to be does not help.