To think what is going to happen to all the children that are ND

[Donthaveacowman45]

Teenage daughter is ND, she has autism and ADHD with additional needs. Attends a main school, has support in terms of a TA and is verbal. She is in all the top sets and is doing her GCSEs next year. Overall she is going to be able to live a relatively normal life compared to some people with her conditions.

But what about the children her age or young adults that are not going to live a normal life? There seems to be a lot of parents who post on MN about their kids having additional needs are SEN etc. So is this a case that being ND is increasing or are more people just getting diagnosed? I’m talking about the ones that won’t be able to get jobs, go to uni, drive or live alone for example. Also what will happen to the work force? We need young people to work so they pay tax and into a system that supports pensions, etc. What if a lot of young people can’t work in the future? What will happen?

Single parent here, only one child who is autistic. I have sleepless nights about who will look after her when I’m gone. It’s heartbreaking

Alot do "catch up"

My step brother attended special schools, wasnt entered for GCSE's, couldnt be left alone in his teens, has a lot of SEN/ND needs. However at 32, he has a degree, owns a house, and works full time. Yes he required support to get the house, additional support to get into uni and didnt go at 18, he was much older, and has needed support in learning to manage his income and priorities, but he has done it and is successful.

My eldest is SEN, attended a mainstream school but barely passed his exams, he went to college but hated it. Now he is working full time. The job role is min wage but he loves it. He still lives with me but is gradually learning to manage his income and im moving bills over to him gradually, and he has to pay me rent which i s reduce as we move things like his phone over. Hes now 22 and hopefully in the next few years we can get him set up on his own.

I was diagnosed AuDHD in my late 30's. when i attended uni. I spent my 20's doing dead end job with no direction or ambition. In my early 30s i decided what i wanted to do and did it, started uni at 36 and qualified as a nurse at 39, now i have a role in emergnecy nursing which i bloody love and will continue to progress in. It took me a while, but i got there and foiund something i love.

Theres some who will never move out of live unsupervised, but theres also facilities popping up all over. I live near a cafe that employs SEN/ND people. Alot of the staff have autism or DS. They only do 1 or 2 days a week, but they are working, and the local community attends the cafe (even though the prices are atronomical in comparison to other places).

But i think most ND kids do find their place eventually, it just takes them longer sometimes

So, taking it one at a time:

there have always been people with autism. Kanner’s autism paper was in 1943 and although he called it infantile schizophrenia it was fully recognised by many doctors that what he saw existed.

children with classical or severe non verbal autism had a number of options post world war - some parents kept them home and looked after them, employing carers etc. Others (or the same parents for older children) placed them in long term mental institutions.
they lived there for most of their life.

this is pretty U.K. specific by the way.

many of the big mental hospitals closed down in the 80s and the push was towards “care in the community”.

by that point some therapies that helped improve social communication and develop alternative methods of communication (PECs etc) had started to develop and you start in the 70s to get special schools or as they were called then schools for the educationally sub normal.

as special schools spread and the therapies spread many children with autism develop on a path that brings them closer to being able to cope with everyday life.

so some live at home with parents. Some live in 24 hour residential care - there is a place near me that is a small home for young adults who can’t live independently where carers are provided and meals are cooked but they can go out and about around the village and socialise either by themselves or with a carer.

one of them sings in my choir.

whether the increase is due to an increase in diagnosis or is a true increase the jury is still out on a bit but it seems to be both in part.

Autism and ADHD run in my family. A lot were only recently diagnosed but were just described before that as difficult, anxious, useless, 'different' and lots of other lovely things. A family member was nonverbal and very significantly ND but never formally diagnosed with autism - is working and living independently now though.

DSD didn't cope well in school, didn't cope well with friendships or many aspects of life.

Then at 19 she got her first job,.a very basic entry level job. And she has flown! She's already had a promotion, she's happy and confident and saving hard.

I think the school environment just isn't a great environment for helping some children thrive

I don’t know, OP. I’m the parent of a child who is severely affected by Autism. I don’t know if she will ever be able to work or hold a conversation or write her own name. The worry is indescribable.

Our hope is that my DSs is able to live in some sort of assisted/supported living setting when we’re not able to care for him, either because we’re not here or because we’re physically unable.

We try now to do some work on independence skills. He won’t work, but in an ideal world he’ll be able to make a sandwich, put a wash on, wash independently.

It’s a pipe dream at the moment but we have progressed to getting his own yoghurts and spoons so maybe!

I think the school environment just isn't a great environment for helping some children thrive

I don't know what schools are like now because I don't work in that area and I'm not a parent, but I can state with surety that it was a total nightmare to be an autistic child in State school in the 70s and 80s.

Expected to fit in, cope, conform, and participate in all the things that cause me immense distress, and universally viewed as "the problem" when it led to breakdowns, no interest in participating, truancy, refusal, contempt for consequences etc.

Absolutely no recognition that there could be any other explanation than me simply being a "difficult" pupil.

I'm really hoping this will be DD. She's 16 now, hasn't been in school for years, took English and maths classes this year, but hasn't been able to sit the GCSE exams. I would love to think she'll thrive once she gets a bit older.

There was this in the past, just more unseen and not talked about and they aren’t all heartbreak stories op, there’s care homes that are a far cry from the books we read and there’s family members that don’t see them as a burden. When my mum goes my brother will be with me until the end because he’s a great guy and deserves it. I think the future can seem scary and we need to prepare them for being as independent as possible if that’s possible but outside of that just one foot in front of the other and don’t spend your whole time worrying x

I feel exactly the same. I get tearful when i think how my daughter will cope with adult life, especially when we’re no longer here to look after her.

😢

So are there more autistic children or has there always been the same amount and it's just diagnosed and understood more now?

I'm pretty sure it's the latter, in which case they'll do what people have always done - find something that suits them.

My BIL is autistic and works as a postman. The job suits him. My cousin is autistic and works in finance. He's very good at what he does but doesn't really have to communicate too much with people.

My DS2 is autistic, and as much as he can be a nightmare with his quirks, I'm sure he will find his thing.

As for those who are severely autistic, another cousin of mine is in a residential home. He is mid 20s and has been there since late teens. They give him tasks and activities to do each day and he learns skills.

I'm not sure there are considerably more neurodiverse people being diagnosed that would struggle in the way you describe (perhaps a slight increase, but nothing huge).

I think the 'extra' people diagnosed as neurodiverse are mainly those who would previously have flown under the radar, struggling but not enough to prevent them living a relatively normal life, albeit with challenges.

Me, my sister, and all but one of my cousins have been diagnosed with either autism or ADHD as adults. We all flew under the radar at school. We all have at least an honours degree most are married or in long term relationships. All but one of us is likely to live a 'normal' life. One needs more support but is still able to live independently.

One claims her autism has always been a positive in her life and only really struggles with lots of noise and one particular smell (easily avoided in her line of work). The rest of us were diagnosed with depression, PMDD, or various anxiety disorders before landing on the real reason we struggled with various things. Historically, we wouldn't have flagged on any record because we would never have been diagnosed.

My dad is very audhd, he got a job driving around the county checking something specific. He would incorporate walks and nature things into this. He got no qualifications at school but his job was perfect for him, it was local council.

It didn't pay much but it was the 90s so he raised a family on this wage

That is good to read, I was more on about the kids who are not verbal and very severe ND.

But some kids who are non-verbal dont stay none-verbal into adulthood. They learn coping mechanisms. As i said, my step bro is what i would consider severely ND, even at 18 he couldnt be left alone, he had no danger awareness at all, couldnt even leave him to boil a kettle. Now he lives independently in a house he owns. What ND is like in childhood is often very different to what its like into adulthood.

There are now procedures that can be put in place with non verbal autistic kids.

they are usually spotted fairly early, at the age 2 health visitor check. Then portage and speech and language therapy get involved.

they usually start working on makaton which is a simplified sign language and very easy to teach (baby signing is based on it) and PECS (picture exchange communication systems).

if you are able to intervene early with these therapies (and others that work on building the need for communication) then children who otherwise would have been non verbal as adults work through makaton and pecs and become verbal.

they aren’t always very fluent and are unlikely to be the next Shakespeare but they can certainly communicate.

I’m hoping that my daughter being diagnosed in her teens means she will get support and not have the issues her aunt / dad have in adulthood at age 50

Ditto xx

I recognise in many of the children i see diagnosed now, children i grew up with who were just considered naughty, daydreamers, shy, quirky etc. These are the kids with autism or adhd but no learning disabilities, whose difficulties didn't meet the threshhold for diagnosis when the bar was higher.

Lots back then just bunked school a lot or muddled through, left at 14 or 16 and emerged with few qualifications. Schools were not expected to tailor them an individual program to help them achieve grades, and parents didn't expect school
s to both accomodate their struggles AND coax academic qualifications out of them too. Most eventually managed ok in the adult world, indulging their special interests, wearing what they wanted , not forced to socialise in ways that didn't suit them, able to choose to avoid things that made them uncomfortable. Adults have a lot more choices/control, just because someone struggles with school doesn't mean they won't find adult life easier.

Nowadays schools are held so accountable for kids results, parents expect a massive amount from them in providing 1 to 1, incredibly personalised education. It doesn't actually seemto help these young people go on to become productive adults either now.

Those who are worried about what will happen to gheir kids when theyvare no more, have you discussed options with a social worker?

All of the PPs mentioning supported accommodation or residential care...have you ever heard of Shared Lives?
Care provided by host carers in their home so it becomes the person in need of care's home too.
Fantastic scheme.
The individual does need to be assessed by a social work team though and meet their criteria and to have a need for care and support.
I work for Shared Lives and we support people from 18 years old upwards. I work with many families who start with respite with a plan for long term when either they're unable to provide care themselves or their relative wants to move out themselves for own path in life.

I read 2 articles in the Guardian (I think!) last year which have come to mind and made me think of your daughter.

The first was about a couple with an autistic son, who bought some land from their local council and built a small residential housing development for around 20 adults with ASC and LDs. A bit like the Camphill Community Scheme but on a smaller level, run by people with a commited interest in keeping vulnerable adults safe.

The second was an article by (ex tory health minister) Savid Javid, talking about a scheme called Shared Lives. It's sort of like adult fostering for those with developmental disabilties, MH conditions, LDs and other conditions like dementias who need help with everyday living tasks.

Some service users live in their own homes, and visit the Shared Lives carer in their home/community an agreed number of times a week for support with socialising, finances, travelling, medical appointments, etc. Others have a full time live-in arrangement where they live in the SL carer's home like a lodger, and become part of their family (many service users have lived with their carer for 10/20/30 years!)

Javid was promoting the scheme as a kinder alternative to the loneliness of some residential homes and flats, and overall it seems to work out cheaper too, with lower rates of hospital admissions and illness, improvement in MH and overall happiness, community engagement, developing living skills, etc.

A good idea for vulnerable/non verbal adults who might not do well with the constant staff turnover in sheltered housing, and possible abuse/exploitation that comes from being alone with no one to oversee them.

There's an oil billionaire in Texas, USA who built a huge theme park for adults with DDs when he realised there was nothing available for his profoundly autistic daughter and her friends. I believe he's trying to start a housing Co operative too.

This might be the future of care for SEN adult children. Parents and relatives, along with other philanthropists building 'villages' for their kids and future generations of adults. With other neurodivergents perhaps getting involved too, where possible. There are a lot of autistic adults who do great advocacy work for the autism community and they could have a role here too.

I think it's going to take parents mobilising and forming huge networks together to get things done, because housing and caring about the most vulnerable will never be an issue that politicians can be trusted on. It's not a vote winner for them.

The thought of your child being supported by parents of SEN kids themselves as they age, like a huge community scheme, seems much better and kinder (though I appreciate there are some great residential placements, they're becoming increasingly harder to find/fund)

There are various settings where ND adults can live and thrive, even with high support needs. I’m involved with a charity that has been doing ground-breaking work in this area and am really encouraged not only at the approach they have developed, with a state of the art residential facility that has been so well designed that medication has been reduced and significant behavioural improvements observed, but also at other initiatives being taken.

I'm being a bit vague as it could be outing, but there are some excellent settings in the care sector, staffed by caring, kind teams who embrace each individual for who they are and support them to have the best life possible. There is much that is wrong with care provision in this country, but there are definitely organisations that are working to make it better.