"Autism is a difference not a disability"

[MJCadman]

Do you agree!

I personally don't. I hate it.

I think it minimises how hard life is.

Also dislike "Autism is my Superpower, what's yours"?

I don't want to normalise autism. I want people to understand it and make allowances.

I know this isn't what everyone else wants. This is the Neurodiverse MN board. I'm not talking about having kids with it. My daughter has it and of course I want her to be seen like the rest of her friends. I just mean for me personally I do want people to know I think differently. I can't have it both ways. One way for me and one for my child.

Im so sorry you feel that way. Truly (I hope that doesnt come off as patronising). Im autistic, three of my four children are autistic. I dont feel that way at all - except for the bit about workplaces. My job is to support and advocate for uni students with autism. I love it but there is a lot of fight to get them reasonable adjustments and obviously I see their struggles. Parenting my kids (all adults) was an absolute joy. Yes there were struggles but I minimised these - they were homeschooled for a start so that made life 10000 times easier. One couldnt do busy places restaurants, shopping centres, theme parks - we just didnt go there or limited them. It wasnt shit parenting her it was great because she is amazing, and I worked out the scaffolding she needed to be happy. Did meltdowns still occur when I missed things? Fuck yeah. Still was a great experience and I really miss her being young and she says she loved her childhood.

Perhaps it could be said that autism is a difference that can be a disability

I have two autistic children and have worked with autistic children for over 25 years.

In some ways my oldest child has many 'superpowers'. He is single minded, determined, independent, and sees mathematical problems in a different way however these 'superpowers' can be 'disabling'.

For the children I work with and their families they can find live incredibly challenging even with their families and the school working incredibly hard to create an environment where they are not overwhelmed.

Threads like this are the very reason I no longer refer to my daughter as autistic but as having a "neurological disability".

Once again fully capable and life functioning autistic adults or parents of capable and life functioning autistic children completely disregarding those whose autism is literally life limiting.

"The Forgotten Autistics" as I like to call them. Children like my daughter where her autism means she will never live an idependant life. Her emotional, verbal, understanding and social capabilities are that of an 18 month old. She is 9. It's all very well referring to "super powers" and "thinking differently" but the reality is for a small forgotten portion of the ASD community autism is a severe and debilitating disability.

@ForTheLoveOfSleep I completely agree. I have worked with many families for whom having an autistic child is incredibly challenging. My personal experience of having an autistic child is 100% different to the families I work with. I may have more empathy but each person is unique.

You misunderstand. Autism is a spectrum. And some have got a diagnosis and you'd be hard pushed to tell from their communication skills but was sensitive in the sensory stimulation. Or vice versa. Point being if the whole world was divergent it would be as hard to manage as a NT one.

I wasn't including NT people in the discussion at all.

So it's a condition with many presentations. That doesn't make it a problem to think of it as a condition at all, as you said; it makes it a condition which doesn't compare well to other conditions.

I am autistic and I agree I am different and not disabled.

I have learnt to adapt my personality if I have to - I have learnt that I should "act" the "feeling" I can't feel in certain situations...

I don't need any special assistance, arrangements made to suit me or a lanyard exposing my autism.

I like the way I am.

My daughter is autistic nearly 8 and has mind of 18 month old will never live independently and unable to do basic things and needs one to one support 24 hours a day. If she isn't disabled I'm not sure what she is. It's laughable the idea that autism is a difference and not disability if it was so depressing, I belive it can be for some but, unfortunately due to her unable to communicate a lot people and children like her are not able to be in conversation and he difference people are able to be verbal ironically

My grammar is terrible she has spent last 2 hours biting herself and me and I'm feeling bit crap and spelling and grammar are out!

Hallelujah.

Although the "doesn't compare well" is a bit loaded.

I'd point out that diagnosing the condition/s is relatively recent. It wasn't a "disability" unless there was something fell under the physical model of disability. The fixed interest, dull bloke in the 70's was just that but he wasn't considered disabled or needed fixing.

I agree with you completely. I find it much harder now when I say to people my dd can't do that or won't do that because she is autistic.

They just think automatically of all the people they know who are now being diagnosed. Who in general live ok lives. Work have families and so on.
And they think I am being dramatic and my dd can do everything those people can.
But she really can't and will always need a full time carer.

That's purely because nobody ever thought to ask that "dull bloke" what was going on, or why he never left the house. He was just excluded from society, because nobody wanted him out of his house. Go back a couple of hundred years further, and he was the village idiot or the recluse in the woods.

Now, however, he's earning six figures because his talents are useful in the modern world, and everyone's suddenly interested.

Funny how that works.

@chicken2015

You have summed up why the current single diagnosis of autism is not useful.

I believe in time autism will stop being a standalone diagnosis and instead it will be descriptive as to traits of a variety of disorders. Many known genetic disorder have autistic traits as part of their profile, I truly believe we are just yet to understand the other causes of these traits.

My dd is autistic, diagnosed young and was tested for genetic causes due to presentation but nothing was found, over time perhaps something will be found though. She gained verbal skills very late but is at least bright and musically gifted managing sort of to live independently ish. We are lucky!

People with severe autism (therefore lacking meaningful verbal communication, needing constant care and with learning disabilities are just so different that those able to raise families, work and interact with the world (not saying life is always easy but it just very very different).

I've found out recently that at primary school it was picked up by my teachers that I had no friends and was socially very withdrawn, enough for them to have a man come interview me and give me puzzles to solve.

Perhaps if I'd been diagnosed then, I'd not have ended up suicidal in year 11?

The lack of immediately noticeable impairment doesn't mean a lack of impairment and certainly doesn't mean that there's no support need.

And it also doesn't mean that no support will be needed in future.

The 'D' in ASD stands for disorder. If it was a difference, or even positive, it would not even be a diagnosis at all.

Plenty of parents of profoundly autistic kids would absolutely say it is a disability. But no ones listens to the parents of the autistic kids that will be getting older and stronger, and having violent meltdowns with no capacity to try to self regulate at all. Or the parents of autistic kids that are still in nappies in their 20s, and totally non-verbal. The ones who shout the loudest about it being just a difference tend to the ones who see it as a "superpower" or some sort of next stage of evolution (have seen that one spouted on social media too). Tik Tok and similar rubbish is full of it.

Labelling it as a difference is harmful. If it is just a difference, then you wont need support, adjustments, carers, DLA/PIP etc.

For my son, ASD is a disability. For me, it is a disorder which allows me partially access to the neurotypical world but not entirely. My “lack of” has had a severely disabling effect on my entire life.

Are there any autistic people where autism does not negatively their lives?

@MJCadman ofcourse not, as that is required for the diagnosis.
However for those with lower support needs / no learning disabilities it tends to be most challenging during the teen years and just like anyone once you leave school and know your limitations autistic adults can make adjustments so that they are able to remove some of the most challenging stressors.

• Online shopping or shopping in quiet hours, shopping in quieter shops there's a huge difference between shopping in Primark which is hugely overwhelming or John Lewis of Fat Face or similar stores which are quieter.
• Working a work pattern that suits you in an environment that suits you rather than chaos of a busy school teens have to contend with
• Able to make own decisions rather than rules set out by someone else.
• Able to wear own clothes rather than uniform
• Free use of required tools like noise cancelling headphones
• Choosing a partner or to live alone to have lots of downtime
• Hiring a cleaner to help clean up and other common executive functioning issues

Diagnosis is contingent upon it negatively affecting you really. The diagnostic criteria include the words deficit (multiple times), impairment and so on.

I think it minimises how hard life is.
I think that's true, but I wouldn't change. I am who I am, and that is autistic.

I think that the problem is that the diagnosis of autism covers such a wide range.

My friend’s son has a diagnosis of autism. He is in his thirties, has a vocabulary of around 100 words, wears nappies and lives in a residential setting. He is what I would describe as absolutely disabled by his autism. Though as he is physically fit, perhaps not absolutely.

When contrasted with an individual who is able to attend a main stream school, has a family and a job etc but who has the same diagnosis the word no longer seems to have a coherent meaning.

It has plenty of meaning - and that meaning is described comprehensively in the diagnostic definitions.

The fact that many people don't understand that meaning doesn't change that.

The word "vehicle" just as accurately describes a tricycle, a supercar and a lorry. That those are - on the face of it - very different entities doesn't make the word "vehicle" meaningless.

Some people have terminal cancer. Others have a small breast lump or a cancerous mole removed at stage one and enjoy complete remission for life.

Would you claim that the second people didn't have cancer?

The problem is you always have to add extra detail. Describing my child to someone by saying ‘my DC has autism’ has little real meaning anymore because the diagnosis descrbes such a range of impairments. People just think of stereotypes, and probably the wrong ones.

’Autism’ isn’t much use as a descriptor imho.