never be able to be independent

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Can someone please specify what it is about autistic people with learning needs that mean they "will never be able to be independent" and how exactly this is determined if they have not tried every way possible to get them the support that they need. I wasn't born understanding what a joke was for example, but over time was able to recognise most of them somehow so no longer take offense to them. I have autism and I am finding it extremely offensive to suggest that autistic people "will never be able to be independent" and questioning their decision making. I have faith that they can if they are given the right support and I feel as though these autistic people are being belittled and "taken care of" well beyond when they should simply because they have learning needs.

My son is 14, he has autism and severe learning difficulties. He goes to a special school, I take him to the door and he is brought back to me by a member of staff at the end of the day. He has no concept of money, road safety or stranger danger. Sadly no amount of support or training will enable him to live independently. He is simply not capable of it.

My 24 year old son is autistic. He has a job, a mortgage, a partner and a 1st class degree. His step brother is 18 and also autistic. He need a 24 hour care.

If I am understanding properly, OP you are upset that the professionals involved in your younger life had low expectations of you, dismissed your potential and so on.

This is why I actually don’t think it was helpful removing terms like Asperger’s and high functioning autism and instead suggesting that we shouldn’t differentiate between people on the spectrum. The needs that someone who is high functioning has bear no resemblance to those of someone who is non-verbal for instance but I’ve seen people say that they are “just as autistic” as someone further along on the spectrum which is just not true.
FYI, I have a PhD, a responsible job, a mortgage and am completely independent and have been since 18. My problems relate more to social skills and anxiety and I do sometimes feel I need some support in that area. But there is nothing that prevents me from being independent.

c. 25% of autistic people have an intellectual disability, and c.25% more have borderline ID - so that's c.50% of autistic people with an ID of sorts. A common co-occurring condition is executive functioning, so that might be someone who needs a degree of assistance with daily tasks. You can have what was called 'high functioning' autism but issues with executive functioning. In some countries, health services will assist in life coaching and other methods to support independent living but not in the UK

My neighbour has a diagnosis of ASD. He is a GP, community leader, married, two lovely kids, lots of friends. He was diagnosed as an adult because he needed support. But the support he needed (organisational and social support to enable him to continue to thrive in a difficult career) is very different to a family member with autism who is non-verbal and needs help with basic life skills such as dressing. I'm another who thinks labelling everything under ASD is unhelpful.

Honestly OP, I understand what you're trying to say, but the wording in your OP wasn't clear exactly what you meant.

My DD also does this, where she believes that I know exactly what she means, but without her telling me exactly what she means. I think you may have assumed that your OP was self explanatory ? (I've also got decades of experience working with ASD kids and families and in running clubs etc for them)

The problem is funding usually, and an expectation that parents will teach ASD children how to live independently (the same as neurotypical kids get taught).

But because the Autistic Spectrum is so vast and 'individual', what YOU are capable of, won't be the same as someone/anyone else ? So any 'help' would need to be specific to each individual, and that's very expensive (and NOT a 'priority' spend for councils/NHS etc as it only benefits a very small section of society, therefore not the best use of their limited money.

Some charities try to help and some local ASD groups etc might have sessions on this, but most are attended by the more severely affected children, who would not benefit from it at all.

Ideally, more groups like 'social eyes' etc could help with this, but as they're all run by volunteers and not well funded, it would be a bit hit and miss because there's not many groups around the country. I'd like to see NAS do more in the way of classes teaching budgeting/ banking/ money management etc which people could attend.

As the parent of a severely autistic adult child I agree too. I always say severely autistic.

I think part of the problem is that the support doesn't exist. My daughter is 18 and autistic. She needs to be in an environment to learn independent living skills with other, similar, autistic people. There's nothing around here. Plenty of stuff for people with learning disabilities and physical disabilities, but nothing for high functioning autism (and yes, I hate the words 'high functioning'. She could obtain a maths GCSE but she can't manage money or turn the oven on).

If she continues to live with me, she'll never be independent. She has developed too much of a reliance on me. I hope it'll change, but until external support is readily available, I don't see it happening.

It's called autistic spectrum disorder for a reason. Many people with autism are like yourself, perfectly capable of being independent and understanding and effectively using coping strategies. At the other end of the spectrum are people who can't function without support, who can't implement coping strategies without support, who struggle to construct timelines, who need rigid routine, who the world is just too much for.

It's not the diagnosis that determines how independent a person is, it's their capacity to understand and remember concepts and issues, if they're not physically limited.

My friend is probably one of the people you are talking about. She will never be fully independent. We have known each other 35 years, since primary school.

She lives alone, and is independent for all her personal care, looks after her apartment well and cooks and shops herself.

What she can't do is independently manage financial affairs, hospital or doctors appointment.

In her case if she has unrestricted access to her own money she would empty her bank account and hand over whatever she had to anyone who would ask.

She would fall for every single phone or email scam.

She would and has lost money she can't afford because if someone asks her to do something she does it, without regard for herself. She understands that she struggles in this area but just can't say no to anyone.

She is an incredibly vulnerable adult because of this, and people would manipulate her, it's happened before.

She has a key worker, alongside family and a few of us friends. She is as independent as possible while still having a safety net.

There is no blanket, one fits all rule.

Yes but most of the portrayals of autism and the way it’s presented in tv and film is of highly intelligent, Sheldon Cooper or Elon Musk types who are a little obsessive and quirky but basically very high functioning. Lumping everyone together and saying we’re all part of the same spectrum just marginalises those with severe difficulties even more.

The ability to live independently isn’t just about performing tasks - it’s about executive function, understanding the general requirements of day to day living and social contracts.

My older son is very capable in many areas. He needs to be told to do every single bit of self care. He can do it himself but it will literally not occur to him. He’s young, he can learn hopefully. But the reality is many people like him will seem able to function well independently but lots will get missed. And those could be very important things.

ASD DP was told he’d never finish GCSE’s, here he is with a Master’s and £££ years later.
But that’s the issue with incompetent professionals. Not the particular phrase you’re referring to.

There’s also a degree of ‘can manage with appropriate support systems’ but is that fully independent?

No clue really.

Exactly this

It depends. Some are unable to "learn" because their impulse control and processing difficulties prevents them assessing situations and risk well or understanding concepts like money, travel timetables or personal security. Without day to day care they may inadvertently put themselves and others in danger or be vulnerable. This may be due to Autism or a range of other difficulties which are often comorbid, If by independent you mean they acquire basic life skills and can cope with support then that may be a resource issue.

agree also.

My DS with ASD was exceptionally surprised recently at the McCains advert which described children with autism as disabled. He said 'Am I disabled?'. he would have been Aspergers in the old days. I said that ASD is disabling for many people, including in many ways for him, but that it is a spectrum and so some people are severely affected. I was clumsy in my response but I very honestly do not think that the current approach is helpful. One of his recent ed psychs tried to tell us he ought not to be in a mainstream school because he has ASD. He does have issues relating to this, but his very good school have very good SEN provision and for now he is in an appropriate setting.

Oh that is a good point. 'appropriate support systems'.

My eldest DD is suspected to have autism to some degree on the spectrum. She went away to university and life went to shit. Incapable of managing her time, money, health, managing work, friendships etc. I can't see how she will live alone when she just shuts down and doesn't pay bills etc. when I spoke to the doctor I said that she just couldn't 'adult' that's what it boils down to for her being able to live alone.

My son is autistic with adhd with learning difficulties , he requires constant 2:1 supervision . He won’t be able to live independently. He is almost 11 and his needs are increasing all the time .

I’ve also got autism myself and am very different to my son . So of course it will vary if some need support and others will not

I think you are struggling to express what you mean.

Hopefully, I've understood:

You've had the experience that you were deemed incapable of doing certain things and as a result were considered unable to live independently. However, you believe that had you been provided with support that taught you how to do those things, you could have learned and therefore been independent.

Assuming the above is right, it's very difficult to determine what is lack of ability and what is lack of experience/ teaching. It can sometimes take several years to teach someone a particular life skill and without consistency of a care giver (like a parent/ long term carer) it can be even harder. Often, after a period of time (usually 6 weeks) if someone is not making progress toward that life skill, they are considered unable to learn it.

There's also the fact that there are very few support services which are set up to do this sort of teaching. I'm fortunate to work in an area which has 2 such providers for younger people with autism and learning needs and it works very well. It's not a very profitable model, so it's difficult to get agencies to do it.

It's absolutely not right though.

I’m autistic, retired professional etc. dd is 25, she has a degree. She will never be able to live independently. I can teach her a million times that leaving the cooker to watch television is dangerous. That putting her phone in the oven is not wise. That not taking her medication properly can be dangerous. Some things cannot be learned.

I know someone with autism who vehemently insists she can live independently - and has had the support from both family and external agencies to learn life skills and so on.

However, the nature of her particular ASD also means that when living independently she has repeatedly been a danger to herself and others. She doesn’t accept this. She has twice had to be hospitalised because she essentially poisoned herself with her chosen diet, among many other things.

She’s highly articulate and capable in many ways, but whatever she says, she cannot safely live independently and her decision-making isn’t sound.

So even at the high-functioning end of the spectrum, everyone’s experience is different.