What does a High Functioning Autism diagnosis actually mean in practical terms?

[WhitePhantom]

A recent HFA diagnosis as an adult (aged 22), and I'm wondering what it will mean for him in real terms.

Does he need a letter to 'prove' his diagnosis? (and 'prove' it to who - uni lecturers? employers?)
What additional supports are available to someone with HFA?

I don't know what I want to ask really. I don't know where we need to start or what questions we should be asking, or who we should be asking. Any info / pointers / other people's experiences would be greatly appreciated.

Thanks x

There is no diagnosis of HFA, he is autistic.

If he is in education he can get accommodations such as extra time in exams, meetings with an autism communication coach, a study mentor and computer equipment. He will need a form filled in and stamped by a Dr to confirm his diagnosis. There will be an office for disabled students and he needs to start there to get the process started.

When he goes into the workplace he can get reasonable accommodations made for him.

Another important thing is that he will have an understanding of himself and his own behaviour. He can connect with other autistic people for friendship and support.

High/ low functioning are outdated terms no longer used in diagnosis. Reasonable adjustments apply in educational settings and the workplace. What those adjustments are depend on his individual needs and require discussion with a SENCO or management/HR.

Thanks for the replies.

He managed fine all through school (though was always very disorganised) - I guess because it was so structured. He socialises with friends and has a part-time job - so I guess that's what was meant by 'high functioning'; the fact that for the most part he's able to cope with life in general. Or how are the varying degrees of severity described now?

DS was diagnosed at 20. He attends a monthly social group and gets help applying for free bus pass and he gets told of other provision locally that might be helpful.. He's headed to uni this year and will apply for a DSA where he can outline what he needs to help him cope away from home. The uni have been brilliant.
When he needs 'evidence' a support worker from his monthly social group does a letter or form for him.
In social occasions he needs to go outside to decompress at intervals and he finds 'people' quite tiring but actually once he was diagnosed things got better for him as he knew why he was different and worried about it less.

It's best not to go down that rabbit hole since it is so divisive and you don't want the thread degenerating into a language argument.

There are no official terms right now to describe the levels of severity of an autistic person. There is a move to add a diagnosis of profound autism in the next DSM for the most disabled autistic people.

Some people (mostly some autistic people) prefer the terms high or low support needs, some people (often parents of autistic children) want to be able to describe their child as high or low functioning.

I was diagnosed with autism as an adult. Practical support I've received has included: extensions to uni deadlines, extra support when repeating years at uni, extra time in exams, disabled students allowance for software, books and printing, PIP and ESA benefits, support with getting council housing, a free bus pass, general recognition as a disabled person (useful for getting free carers tickets for attractions and theatre tickets and gym membership). I have additional diagnoses on top of autism, some of which were more relevant when accessing some of these. I've never been in employment since graduating so I haven't accessed any workplace support.

I've been part of social groups with other autistic adults but I've never found it that helpful longer term. Autism presents so differently in different people that I don't really have much in common with them.

I tend to describe myself as having been diagnosed with autism, but I don't refer to level of support needs or level of functioning. I do like to make the distinction from being self-diagnosed though.

I was diagnosed with "autism without learning disability" a couple of years back.

The big impacts:

• "so that's why I do that and other people don't" instead of thinking that I just need to try harder or pretend to be OK when I'm not.
• Access For Work assessment and grant to fund things to help me keep my job.
• Being able to research autism traits and symptoms, such as sensory processing differences, evaluate whether those traits apply to me, and if so, then examine what I can do to mitigate the effects of those traits.

That last is probably the most important. Any woman who has ever worn an incorrectly-fitted bra (so all of us) and then had a proper fitting understands how a person learns to tolerate discomfort, even quite considerable discomfort, as being "normal" and thinks that everyone else endures the same until something happens to make you realise that this thing doesn't have to be uncomfortable and you can make it better. So realising that the tension headaches and migraines and eyestrain and squinting under office lighting weren't normal for other people, that I was experiencing this because I'm autistic, and that I could choose to wear sunglasses indoors to make that pain stop made a huge quality of life improvement for 40 hours per week plus not losing evenings to migraines. Then repeat that process for noise, crowded places, it makes a huge difference to how comfortable I am.

Welcome to the world of autism where every word you speak will be dissected. We have completely lost the ability to communicate about our condition because the “acceptable” terms constantly change. Try not to let it get to you.

if your son integrates well with neurotypical society, the diagnosis mostly means that he better understands himself. If he needs supports or accommodation he can apply for them as they come up, but not everyone needs anything formal.

@WhitePhantom Or how are the varying degrees of severity described now?

They are not. As it currently stands, apart from L1/2 (which doesn’t make complete sense either as many people would have cross over to varying degrees), it’s all ASD. There is no distinguishing between an adult who is completely non-verbal, not toilet trained and in institutional care and your son. I think it’s doing everyone a disservice but don’t even go there on here as you will get people swamp in to tell you they are every bit as severely impacted as an institutionalised non-verbal, non- toilet trained person with ASD who needs to be medicated to the eye balls with anti-psychotics due to the frustration/aggressive aspect, and they should not be distinguished as being ‘lessor’ impacted than that person. Suggest trawling through historical threads if you are going to be posting here re ASD.

Thank you so much for those replies 🥰

I had no idea it was a divisive description - my apologies if I've offended anyone. A lot to take in and I'm trying to learn all I can to help him move forward.

At the moment (well for the last couple of years really) he's not moving on any direction and it's so hard to watch. He's extremely intelligent and well-read, knows so much about such a variety of topics, but... its all going nowhere.

Thanks again x

Autistic. Zero help.

In my experience it means good fucking luck getting support or even understanding.

High Functioning Autism means autism without intellectual disability, not mild autism, or a little bit autistic. It’s nothing to do with having friends or holding down a job. Some people with HFA are very disabled by it. I didn’t think this was an official diagnosis anymore.

The practical outcome is that now he will know he isn't 'the only alien stranded on earth', but part of a large community of people who feel the same and think and behave in similar ways.

There isn't much else for an adult apart from that....but don't underestimate it, the above is huge.

My DS was diagnosed age 7 and is now at university, he has other conditions too. His diagnoses have enabled him to get an EHCP while in school, Disabled students allowance at university and he is in receipt of PIP (disability benefit) because his conditions mean he needs WAY more support from other adults to be able to do what he does than a typical young adult. I manage all this on his behalf as there is unfortunately no way he'd cope with these processes without that help despite his being of above average cognitive ability. It is hard work and takes a lot out of me.

I also agree about the terminology minefield, it is upsetting and difficult to navigate.

It really boils my piss when "some people have it worse than you" is basically used to shame "high functioning" autistic people who try to get help so that they can, for example, keep a job. I think that's where the "I'm just as autistic" crowd are coming from, they are rejecting that shaming tactic.

The answer isn't to claim that autistic people are more or less autistic: you either are autistic or you aren't. The answer is to acknowledge that autistic people have differing support needs. Denying the differing support needs is extremely harmful to everyone involved, which I think is your point in different words.

There are some people with Down Syndrome who have to be institutionalised, yet I've seen people with Down's work as TV actors. Thinking of autism the same way would be helpful.

Can get a learning assessment giving extra time etc with exams and essays. Ask the Uni, who should have a dept to help.

High and low functioning back in the day, referred to IQ levels, NOT how well an individual functioned in society.

Schools and LEA's started misusing the term, and slowly the misinformation seeped into common parlance.

Attempts to fight back against it were not welcomed, and combined with other messing around with language and descriptors, here we are.

It’s a spectrum rather than a scale. There will be elements of each diagnostic criteria which pertains to the individual, but for some there will be more boxes ticked, and for some less.

What are you on about
He's either autistic or he's not
I was diagnosed autistic last year
No such diagnosis available as high functioning
Just autistic

There is a spectrum of autism. I have it and was able to mask it well, appearing shy as a child. My nephew, on the other hand, displays more obvious signs of autism - making loud guttural noises, repeating the same question 100+ times a day, repeating the same play multiple times in a row for example running in circles for a long time, bumping into people at the park, cannot as of yet answer "how was your day" or give any detail of his school, unable to say or understand the word 'yes', has an extremely limited diet and struggling with basic tasks like putting clothes on. Having a loving support system is crucial for those with autism. Understanding and acceptance from society can greatly improve their quality of life. So I would strongly advise is important for employers and teachers to be aware of his condition to provide proper support.

The terms "high-functioning" and "low-functioning" may have been dropped, but there are still individuals who fall on different ends of the spectrum.

This is the best explanation on this thread.

A more visual explanation of these concepts here: the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

Thank you so much. This is exactly why I used the term high functioning, as it was used for the diagnosis. It makes total sense to me that there must be some kind of vocabulary to distinguish between the two extremes!