Is anyone the parent of a child with asd and not seeking a diagnosis?

[coodawoodashooda]

Not looking for a bun fight. Just trying to sort out my thinking. Anyone with any of their own insight that they'd be willing to share?

What's the job he wants to do?

The Austism Act prohibits explicitly discrimination against autistic people so if that is happening you should take them to court.

High functioning was used by a professional.
Levels aren't particularly useful and I say that as a high functioning person too.
I totally acknowledge your point about the world's expectations but that is life too.

Yeah, lots of professionals are still terrible in this respect! Fewer and fewer though. I hope this was a long time ago, that a professional used such terms to you? They should know better by now if a specialist in autism with any current knowledge.

About ten years. But being high functioning myself, with all the problems and expectations that entails.... That's just life, I'm very good at what I do.
I don't see the problem.

Saying that all autistic diagnosed people are not on any different levels of severity is eradicating and diluting those autistic people who need high levels of support just to function.

It is the most awful thing about many who have jobs, can speak and understand, can function without having to have a one to one worker - that they would remove any levels of severity and need for those that are for example non verbal, and need carers 24/7. Things have been pretty bad for those with extremely high needs for years, fighting for support. Trying to get rid of any measure of severity is abhorrent as it takes away that person’s right and power to get more support.

Just to be clear, I entirely agree with a huge support system for those who require it.

@MinervaTerrathorn that sucks. Even a group mainly for people with late diagnosis may be a big support to you though - people with autism, similar ages, you said much of the experience is the same as what you've seen described except the diagnosis date and actually others in the group might benefit from hearing your different experience - how that has been hard too - if you are happy to share that. Maybe contact the organised and ask them? You could sit in on a session without speaking and see what you think maybe? Obviously doesn't help if in working hours but they may be able to suggest something - my groups are always evening as so many people have caring responsibilities/ work.

I hope you find some support - you should have had this all along and for me that is the big takeaway from this thread, that everybody needs to be accepted and listened to and understood. And genuinely, do message me if you'd like to.

Nobody is saying people don't have different support needs in different areas: that is what the spectrum shows. A different distribution on the spectrum may mean lower or higher needs. That is not the same as saying one person's autism is more severe than another person's. Again, the amount of help the person needs is you viewing it from an outside perspective - how it impacts you or other carers.

I am guessing @Mumwithsons that you're not autistic yourself? This is always the problem. Parents of autistic children often either ignore their problems entirely, or somehow convince themselves that because they know a couple of people with autism very well they know everthing about autism, more than people who have lived it every day of their lives.

I've seen so many "support groups" that involve NT people (mainly parents of autistic kids who don't really get it) collapse for this reason. It must be hard to understand, and to be able to differentiate between what is autism and what is learning disabilities or other disabilities. And parents of kids with both do a hard, hard job, I have so much sympathy for them. But nevertheless there is a distinction between those things and trying to minimise the autism of certain autistic people that don't fit the same profile of your children because they have additional needs on top of their autism is just wrong, and very misguided, and will also make it much harder for you to understand your own children properly.

A different distribution on the spectrum may mean lower or higher needs

And to be clear in case my copious posts haven't made it so already 🤣 - this means lower or higher needs in different parts of the spectrum. Which may mean, in practical terms living in an NT-designed world, that some people need 24 hour care and others appear to be doing fine with no outside help. But their problems may not be practical, they may be more emotional, or psychological, or to do with executive functioning. The fact that their problems mainly manifest on a different part of the spectrum does not mean they are happier, or "higher functioning" (the spectrum means they may be on some parts but by definition they'll be lower on others) or that it's less "severe".

I've explained this as well as I can at such a late hour. I really hope it helps you to understand better and not say such things in future despite your own frustrations, but happy to talk more another time. I have early meetings and kids to sort out AM before that so must try to sleep. 😩

I think this very much depends on your experience of life. If you have a certain distribution on the spectrum and a loving family and stability, you can sail through or fly.

With that same distribution and a crap family you can fall. It's highly likely you will, if you have certain genetic dispositions.

I read this many years ago when it was published, before I even knew what autism was let alone that I was autistic, or that my children are; before they existed. It made sense to me. Obviously it applies to other conditions people consider "undesirable" too. But if there is a strong genetic link - as we know with autism that there is - there is no reason those genes would persist in the population until now unless they are beneficial.

Subsequently, much other research has supported this and books published, but this is a good place to start, I think:

www.theatlantic.com/magazine/archive/2009/12/the-science-of-success/307761/

The dandelions need the orchids and should be a bit kinder to them.

In that case it prob won’t make much difference to you as the school sound good. My sons school weren’t like that and would out stuff in place until he had diagnosis as he “could just be a naughty child”. Ok we could have gone down the ehcp route earlier but ultimately having an actual diagnosis and assessments and paperwork made things easier

But you can’t compartmentalise autism, severity or support. My daughter has repeated hospital admissions but is supported by a huge amount of professionals and under a CPA and CETR but goes to college, has a job and wants to go to Uni. She has learning difficulties but it isn’t the learning difficulties that warrants all the support, it’s her mental health and how her autism presents which doesn’t help with that.

By saying someone is "high functioning" "mild" or whatever, you're ignoring their difficulties. I've had my "high functioning" / late diagnosis as a excuse to deny me support. But the support I need is just as valid as those who were diagnosed as children who have higher support needs.

Functioning labels are dangerous and only show how the rest of the community see someone not a reflection of their day to day life

It doesn't mean that at all. Someone effected "mildly" can still have support needs of some sort but surely we can agree that not everyone requires the same intensity of support. In fact it would be inappropriate/abusive if that were the case. Imagine being constantly supervised, someone talking for you, having someone wipe your bottom if you didn't need it just because you have an autism diagosis.

the only reason that would happen is if everyone was treated as one simply because of their diagnosis though.

but by lumping people into groups that are neater for society to understand you are going to encourage such things which lump people together based on a generalised tag added.

In my experience it does. I was labelled as "awkward" because I don't like loud noise and no one understood this. They also couldn't understand why I needed more than 5 minutes notice (I was doing something else so couldn't have attended) for an appointment.

That was social services who after the above refused to work with me.

www.bristolautismsupport.org/functioning-labels-damaging-irrelevant/

My diagnosis was 3 months ago and I'm barely functioning. Not sure what category that should be put into.

sirzy, completely agree with you.

Sirzy, I'd never looked at it like that, just how lucky we are.

@containsnuts

It doesn't mean that at all. Someone effected "mildly" can still have support needs of some sort but surely we can agree that not everyone requires the same intensity of support. In fact it would be inappropriate/abusive if that were the case. Imagine being constantly supervised, someone talking for you, having someone wipe your bottom if you didn't need it just because you have an autism diagosis.

But that isn't happening, and we don't have functioning labels?

@BeserkGiraffe I am enjoying and appreciating your posts. They are saying what I'd like to say, only better!

It is the most awful thing about many who have jobs, can speak and understand, can function without having to have a one to one worker - that they would remove any levels of severity and need for those that are for example non verbal, and need carers 24/7

But you're making a lot of assumptions about what you regard as high functioning people and their needs. I posted about my daughter above (days ago!): she may appear reasonably high functioning from the outside, but very much isn't. I have scars to prove it. She couldn't function at all without medication.
Autism is such a broad diagnosis covering a wide range of needs, so each individual needs to be assessed for their own needs, which will be different to others'. But pitching those along a line of severity helps no one.

Had a question I thought I'd pop back to this thread with it.

For anyone who's gone privately for diagnosis, were you then able to access NHS and school services any quicker or did you have to go privately with that too? Just wondering what happens after private diagnosis. Thanks.

@containsnuts

After the private diagnosis it accelerated us seeing NHS services though they insisted on their own diagnosis too which was such a waste of resource, they just produced a shorter report than the one we had. It meant that we were taken more seriously I think and we had more "clout" to argue for provision. Still was a bit of a battle