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.

My autistic 7 year old goes to Beavers and enjoys it.

My daughter had problems going to sleep by herself right up to the age of 12.

I got frustrated once and said "what would your friends think?" She said "well if they judged me for this, they wouldn't be real friends, would they?"

She was right.

She has now got the hang of it finally.

Two of mine hated it. I wouldn’t force it.

My experience is that every ND kid is very different. However they all need coping strategies for when things don't go as expected. My daughter tells me off for not being diagnosed and constantly tells me I am masking. In my opinion I am using coping mechanisms that I had to learn the hard way but feel I've largely passed on with success. It is important not to rely on a label for any special treatment when the aim when I was younger was to blend in. Even now I find it hard to unpick what I do to stop circular thoughts for example but I do know my basics as follows;

1. Plan any days in a new place - look at maps and work out walking times between events. I hate being late with an absolute passion and feeling I'm running behind can make me agitated and lead to negative thinking
2. Make sure I have factored eating in. I get mildly hangry but often forget to eat and have passed out before after becoming distracted by a new area in interest it bought with it. Not having energy to appreciate or do what I am in a new place for means I may as well not go. I now plan where I will eat, maybe 2 options, before I go and factor it into my walking routes.
3. Really make sure I have understood what is expected of me if given tasks. This is really hard often because the person giving them will say things like "you know" or "just do a check" but these can be meaningless when I get to the task and lead to multiple rabbit holes of research that aren't required. Now I will respond with my plan at the time of asking to save time and worry.

As a mum I think you possibly know the things that have been issues in your life - unless it is your partner who is ND where it's likely you have been helping his strategies, so might have an idea from that. Usually planning is the mainstay for me to feel calm and in control.

This is a kinder way of saying what the poster earlier who rightly complained about the inadequacy of “neurodiverse” as a description for people who have needs ranging from struggling with organisation to being completely nonverbal, incontinent, screaming 24/7, only sleeping in 45-minute bursts and so on.

Not that this is the fault of parents on this thread at all, who absolutely have their own, often exhausting, struggles. And I can absolutely see how helpful this thread will be to them.

But it’s not hard to understand why this elision grates on some parents.

I have a 12 year old who is nuerodivergent so find this interesting, thank you.

The biggest thing we have had to teach him so far in life is about feelings and having empathy for others.

We continue to work on self regulation and hygiene.

The next thing will be organisation.

When he was 11, we explained to him about being neurodivergent. It has been a positive experience telling him.

Neurodiverse is inadequate but the term autism isn’t. To get a diagnosis you have to reach a high threshold with significant impact to life, a diagnosis focuses on 3 different areas and having a learning disability is separate.

Worth a try though- every autistic child is different

Why?

Yes it’s a spectrum however I’m not sure what cubs gives any autistic child exhausted each week from holding it together all day at school. Even less downtime and more socialising in a noisy hall.Personally I think cubs and after school activities are exactly what many autistic kids don’t need .

With my DS he was never allowed to use his conditions as an excuse not to do something. We spoke about how they might make things more challenging for him, but that didn't mean he could not do something because of them.

Other than that we taught him as we would have taught any other child, it just took longer for things to go in and make sense for him. We taught him to be independent, so how to wash himself, his clothes, how to cook and clean and how to budget. We taught him to ask for help when he is struggling. His outlook is very black and white so we have tried to show him that there are shades of grey! He's getting better at this but if you don't want to hear the truth, you're better off not asking his opinion!

He's now working and living independently. He struggles a bit with some of the people at work, but he talks it over with us and we suggest strategies that might help.

Couldn't be more proud of him

It’s a spectrum. This approach is what lead my dc to severe mental illness and exactly what we’ve been advised by professionals not to do. Disability is not an “excuse” 🤔and it’s absolutely ok to opt out of things and navigate your own way.

I am diagnosed AuDHD but only recently, and my now adult DC have strong ND traits but not diagnosed.
I just met their needs and accommodated them as best I could at the time.
Things that helped were:
Getting ahead of new situations and talking them through to help with transition anxiety. We’d look at maps before journeys and talk through scenarios, making rules of what to do if…
that really helped with setting boundaries for behaviour as we could do it in a calm home environment not outside while overstimulated.
Allowing expressions of feelings without shame, as long as those expressions are not causing harm to others.
Reviewing situations after the fact, once we were back home and calm. Talking through choices and natural consequences, and problem-solving situations without telling DC how they should feel or react.
Having set places for things. Much less stressful in the mornings if all the school stuff is always in a box by the door rather than scattered round the house. We have a lot of hooks for things because if we can’t see things we forget they exist.
Being good at sewing was really helpful, I added a lot of soft cotton jersey to the inside of rough seams/embroidered logos, and turned up/down trousers so comfy ones lasted longer.
Turning early waking into a chance to get stuff done before school. We were often in the park or out for a cycle at 7am to get some energy out before school.
Talking about food aversions and involving DC in finding safe foods with some nutritional value. We made a list of meals that had at least something in protein, carbs and fruit/vegetables. Some of the meals were a bit tenuous on the veg front but overall they had enough nutrients to get by on, and now they know how to make and eat a reasonable diet.
DCs are now adults that know how to recognise, state and meet their needs, and do not hold the shame I had around ND. They are marvellously unconventional and happy.

We definitely didn’t do everything right, and the DC don’t have the added support needs of learning difficulty or speech problems, but those things made life easier for us so I hope that helps someone.

Learning disabilities aren't part of the required diagnostic criteria for autism, but they're a very common occurrence with what used to be called classical autism. I've read that learning disabilities occur in approx half of cases. They can't just be separated off for all the people affected.
You do need to show an impact on life to get a diagnosis, but the severity and impact varies a huge amount from person to person. I'm what could be considered 'high functioning' autistic. I live independently, went to uni, got married, worked, had children. My DD has severe/profound autism with severe learning disabilities. She'll need 24 hour care for the rest of her life and will never be able to do any of the things I have. It would be ridiculous for me to say my struggles have been as severe or the same as hers. We can recognise our own difficulties without pretending they're as significant as others when they're not. It makes it much harder to advocate for children like mine. Of course, my dd and I aren't the only two ways autism can present, and when people talk about neurodiversity or neurodivergance it usually also includes adhd, as well as sometimes other conditions depending on who's talking, which is why I personally find it too vague to be helpful. Anyway this was just in reply to this post, not meaning to derail the thread which seems to have been very helpful for the OP who sounds lovely. 🙂

I believe a single diagnosis of autism is appropriate for all presentations. The fact that there can be such wide variations in those presentations is to be expected and the presence of coexisting diagnoses including learning disability doesn't negate this.
I fully understand the frustration expressed by many, that as a generalisation more recently, autism seems to be understood to be referring to the lower levels of support need rather than the higher.
But the same could be said of other conditions or diagnoses.
The increased visibility on TV etc. of people with Down Syndrome is fantastic. But they are not representative of everyone with Down Syndrome (a significant number of whom are also autistic).
The support needs of people with Cerebral Palsy vary enormously. The daily life of someone with one sided muscle weakness is very different from someone unable to walk, feed, vocalise etc. independently. And again, coexisting conditions add yet more complexity.
A diagnosis is a sign post to a condition, not a full definition of that individuals strengths, difficulties, needs etc. That information is vitally important, but I believe it's best communicated at an individual level, rather than trying create more diagnoses.
Edited to add that support needs can vary considerably at different points in life. High cognitive ability can mask the support needs of autistic people and result in prolonged mental health damage or episodes of crisis.

I actually think it's the other way around - people think of Sheldon from the Big Bang now when autism is mentioned, and young people see self diagnosed or late diagnosed very high masking, very eloquent people all over social media and ask themselves if they too are autistic because they feel self conscious or socially awkward (hello puberty in most cases)...

The adults who I work with who mostly have comorbidities (yes, a fairly high percentage have Down Syndrome and other genetic syndromes, also uncontrolled epilepsy and an extremely high rate of possibly misdiagnosed schizophrenia, instable personality disorders, psychosis etc. and medically diagnosed and coded antisocial behaviour disorders) are on nobody's radar except those who know them personaly. Non verbal children yes, but the same people fifteen years on are not anyone's first thoughts except their parents and carers and the professionals involved with them.

For some people I work with it is the autism that is so profoundly disabling and not the comorbidities - it seems to be being pushed under the rug that autism is communication as well as a social and executive function disorder - and for the people we're no longer allowed to call profoundly autistic it is a disorder, not a superpower. Some of the people I work with are disabled by their autism not their (in these cases milder) intellectual impairment - their communication element is so profound that they don't have anything motivating them to communicate intentionally in any way despite every type of augmented communication being modelled over years, yet they become intensely distressed daily and cannot intentionally communicate their needs - caregivers have to know them thoroughly and design their environment to provide the least distress and try to interpret non intentional communication (behaviour) to guess what is wrong and rectify it to mediate distress which manifests as meltdown and often violence towards peers in their settings. These individuals are often cognitively able in some specific areas not impacted by their specific area of executive function and communication limitations.

Whilst the root cause might be the same, it would be useful to be able to use the US type 1-3 system. The numerical element intended to be flexible and reassessed as a person develops anyway, especially when diagnosed in childhood, rather than a life sentence.

Thanks for using word ‘allistic’ I hadn’t heard of that term before and looked it up.

I actually think it's the other way around - people think of Sheldon from the Big Bang now when autism is mentioned
that's what I posted. Sheldon has low support needs.

My advice is not to let their neurodivergence become their identity, and not to set up them up in conflict with neurotypical people.

This is an excellent post for high functioning autism but also a brilliant example of the truism that for the most part autism friendly strategies are also useful for most "alltistic" or neurotypical people - the second group doesn't need the strategies and adaptions but still benefits from them.

For those profoundly impacted by their autism these strategies and adaptions are way out of reach, and this is why being "allowed" to use the word profoundly impacted without being told off and reminded of the mental health costs of masking is useful. Yes, masking is hugely exhausting and can lead to autistic burnout "high functioning" people can be profoundly impacted this way - but it's different and not every conversation about people who will never live independently needs to be about those who can.

I suppose the counter-view is linked to the neuro-affirmative movement - many more, esp adult-diagnosed, autistic people are expressing themselves, dropping their masks, making their needs known, wearing "Neurospicy" tshirts or badges or whatever (God I can't stand these, those that's my own issue), that it makes the public face of autism much more the high-functioning, high-masking type, and for some that can efface the much less simple, palatable, quirky presentations of autism.

I do worry as one of the former types that I taking away something from people with L3 autism, classical autism - call it what you will - that when I disclose my diagnosis I somehow take something away from people with more significant support needs. As though I'm saying, "Yes, I'm autistic. Autism looks like me, a mid-30s woman with three kids, a PT job and a raging interest in Lego" and thereby excluding other presentations. But then "Autism can look like a lot of things" is more nuanced.

And in the UK at least a lot of the language around autism and lots of other conditions is linked to PIP or other benefit entitlements, so that can skew the discussion.

I'm not sure if I'm happy with a single diagnosis of autism. I go back and forth.

Whilst the root cause might be the same, it would be useful to be able to use the US type 1-3 system. The numerical element intended to be flexible and reassessed as a person develops anyway, especially when diagnosed in childhood, rather than a life sentence

The 3 levels are defined by levels of support. To put them as diagnostic outcomes means they are far more likely to stick @SunriseOver . Think how difficult it is to get a diagnosis. If support needs change, and they can very dramatically very quickly, imagine facing a new diagnostic process for this to be recognised.
I believe its far more beneficial to have the flexibility to describe the individual rather than a category after they have a diagnosis of autism.

Sorry! Yes you did! My mistake - I'm getting tangled up.

And in the UK at least a lot of the language around autism and lots of other conditions is linked to PIP or other benefit entitlements, so that can skew the discussion
Sadly the language of PIP has nothing that relates to the impact of autism, adhd, depression etc. on daily living and independence

I'd add, to go back to a much earlier point, that I think the "Try new things! Don't be held back by your diagnosis!" advice needs to be much more nuanced. I'm near middle age and I still battle with distinguishing anxiety or mild unease with going into a new, unfamiliar or undesirable situation, from "My body/brain is telling me that this isn't going to work for me, but my people-pleasing or masking tendencies are trying to shut that down".

And because I am a reasonable person and irl I don't want to single myself out or draw attention, I often decide that against myself, and suffer as a result.

It's not straightforward.

I do worry as one of the former types that I taking away something from people with L3 autism, classical autism - call it what you will - that when I disclose my diagnosis I somehow take something away from people with more significant support needs
Would you apply that thinking to a paralympian who has Cerebral Palsy but can run or swim etc. @JustGoClickLikeALightSwitch Does their ability detract from others who's Cerebral Palsy impacts their daily living more extensively?