What do you wish you’d taught your child earlier, now they’re a neurodiverse adult?

[Treaclebear]

I’m a mum to a young neurodiverse child and often wonder what skills or lessons will really help them later in life. For those of you whose neurodiverse children are now teenagers or adults what do you wish you’d taught or focused on earlier?

I’d love to hear what has made the biggest difference for your child’s independence, wellbeing, and happiness as they’ve grown.

I meant more that if we start using terms like "Level 1" or Asperger's, that can be read against people who are making benefit applications.

(I do a bit of work writing PIP applications for other people and have successfully applied for autism and ADHD applications and appeals for people, but yes, it is very difficult trying to articulate the impact of ND against some of the descriptors in a way that gets people past the threshold.)

Ah, I see thanks. Yes I agree. I think theres a real danger that levels will simply be used as cut offs for so many things. EHCPs (or whatever is in the offing), benefits, reasonable adjustments etc.
Its too big a risk for me.
For example. Burn out change change a person's support needs upside down in a very short space of time and I dont trust services to apply flexibility if they have diagnostic level based criteria in place

I don't think their ability detracts from others because that's not how ability works, but in the case of autism I think it may reframe the public perception in a way that may work against people with higher support needs. Ie "autism looks like this, not that" - or the parent of someone with very significant support needs is somehow seen as failing for struggling, even though they are comparing themselves/being compared to someone caring for a child whose behaviours are much less challenging.

It's not something that affects my view of others, but it does affect how and when I disclose.

I don't know anything about Cerebral Palsy so can't comment on that.

The US system that has 1-3 levels of support needs stipulates that these levels of support need can change at various stages of life. They’re not designed to give people a level of autism or to be re assessed. The bar is high to get an autism diagnosis and the autism isn’t going to change however level of support need might.

One if my children has needed all 3 levels of support need and that will probably be so throughout her life .

I understand the intention. But how would that work in practice? Who gets to decide if levels have changed?
If they are diagnostic features then only diagnosticians will be able to determine and record changes. Great for all the private diagnostic services but what about the NHS?
If they're not diagnostic features, then they shouldn't be in the manual.

In neither of these cases would the abilities of a person with a less severe condition detract from those of a person with a more severe condition. It's only when those who are less severely autistic etc claim their experiences are the same or equally difficult as those who more severely affected, or when they exclude the families of the more severely affected from support groups etc, that it's an issue. The cerebral palsy/paralympic example is similar, though I've never seen someone with mild cerebral palsy claim their experiences are the same as someone with a severe case. (Of course, I may just not be aware of it.) I have even heard a few people say that all autism is equally severe it's just that some people mask much more which makes things just as difficult or even more so for them, which is nonsense! @JustGoClickLikeALightSwitch You aren't doing anything wrong atall by disclosing your diagnosis! 🙂

It's only when those who are less severely autistic etc claim their experiences are the same or equally difficult as those who more severely affected, or when they exclude the families of the more severely affected from support groups etc, that it's an issue
I'm not dismissing anyone's experiences in real life. But the issues you are referring are not related to issues of diagnosis.

I think it would make much it easier to distinguish between different levels of need if we had different diagnosis though? and be less likely to lead to those issues happening. I get why they got rid of Aspergers as a diagnostic term (it was named after a nazi collaborator) But I do wish they had kept the distinction between them and come up with new terms instead of folding them all into one diagnosis. There are numbers 1-3 that are used in the usa but they are almost never used here and I don't think many people know what they are anyway.

DSM which is where it comes from has no official status in the NHS. It’s American.

There aren’t levels 1-3 for autism.The American DSM have levels 1-3 for support needs. We
are all NHS diagnosed without any levels.

No it would not be easier having different diagnoses as autism is so complex. It would be impossible.

Well it wouldn't be impossible, people used to be diagnosed with aspergers as distinct from autism, I was myself!

When I had my autism assessment they said they don't use levels, as autism doesn't come in levels but is a spectrum condition. All people with a diagnosis of autism will require support in some areas, sticking to levels could be seen to suggest otherwise. So it's not about "severity" but the needs of the individual. I think important to note that some autistic people also have a learning disability, some do not.

The DSM is influential in the field though and can be used by private diagnostic centres

But some people are far more severely affected than others, and we need to be able to distinguish that in some way in order to be able to describe their needs.

That's why I believe that diagnosis should remain universal and then the way in which this diagnosis impacts on the individual should be descriptive. The descriptive part can change, the diagnostic part doesn't. Observations and information from the individual, thrir family , professionals etc. can contribute to keeping the descriptive part up-to-date without affecting the overall diagnosis.
The DSM puts the level of support need into the diagnosis making it much more difficult to be responsive to change.
Adopting an agreed format of identifying support needs could be helpful as long it stays out of the diagnostic manual (in my opinion).

You do that by looking at the needs of the person and basing support on what that person actually needs rather than an arbitrary level.

That's fair enough 🙂 I would just like to be able to have objective terms to use to describe my DD and her needs clearly and to make it easier to advocate for her.

I agree 😊

Yep, this is another one of those moments where I'm reminded that the term 'neurodiverse' covers such a wide range of presentations.

My DC is PDA profile and is absolutely not on board with learning anything from anyone.

He will work something out on his own if - and only if - he can be certain that nobody else stands to benefit from it.

My hope is that if he gets to a point where he can live independently, he'll learn what he needs to learn to get by, because he'll be doing it for himself and not anyone else. I imagine his first point of call, though, will be to enlist others to do things for him.

My son (4) is undergoing assessment for autism and adhd. I am autistic and my husband has ADHD.

I wasn’t diagnosed until I was 32 and as a child my parents (assuming I was just ‘shy’) would try and force me to be more confident and push me into uncomfortable situations which just made any aversions I had worse.

As an adult I’ve developed my own coping mechanisms and am far more confident because I’ve been given the time, space and choice over attempting things. I can now make phone calls to the bank for example.

With my son, I’m focussing on letting him be who he is and letting him naturally develop confidence in areas he may struggle in. He is afraid of hand dryers for example so I always ask if we’re in a public bathroom whether he’d like to try using one. Sometimes he says yes sometimes no but it’s his choice. And we always have a muslin cloth as an alternative.

Obviously we teach social rules etc, this is purely about aversions.

Working on life skills towards independence is essential. I also think building confidence is helpful.

One thing that has helped is reinforcing the concept that everyone has an opinion and view and that is fine. “Your way is not the only way” - the struggle is monologuing and haughtiness. Working on this has improved social skills and friendships have developed.

I agree that if your kid tries Cubs/Brownies and hates it, then it's not for them.

But I don't see why that means it wasn't worth a try in the first place. Plenty of kids (including autistic kids) love it. I've tried a lot of really varied things with mine, and often been truly surprised at what they did or didn't enjoy.

My DS went to one Beavers session and hated it (his paper aeroplane wouldn't fly and he felt like he'd failed at something). So I didn't take him back to Beavers. But a couple of years later, I took him to Cubs, and at that point he enjoyed it and wanted to keep going. Then he went on to Scouts, and then Explorers. It gave him a supervised, structured social space with kids his age, and access to activities that pushed his envelope a bit but not too much. He loved it. He still goes back to volunteer occasionally (not so much the interpersonal stuff, but the practical tasks and clearing up, which is what he feels happy with). Overall I think it's added a lot to his life. So it can be worth trying.

👏👏👏Yep

That sounds really good.

I taught an autistic young man who was simply unable to make friends because he hadn't cracked that. No-one likes constant criticism, or what comes over as it.