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

Sorry, I didn’t have my glasses on and mis read the question.

I work for an organization that provides supported living for some of these children who have become adults ( severe cases), they get housed and cared for, state funded.

These are adults who are severe cases and cannot live independently or work.

I work for Shared Lives and this isn't my experience at all! I currently support a number of individuals with Down's Syndrome both for respite breaks and in long term settings with carers.

Also Shared Lives is a hugely popular scheme and where I work we've a number of individuals who were on a supported accommodation path now coming to us.

Our only barrier is getting more carers, otherwise we could grow and grow.

@deusexmacintoshi work in adult social care and shared lives isn’t very popular. Few older people or homeowners are open to having someone with Down’s syndrome, for example, live in their house. It’s really such a rare occurrence that it would work for both.

On Chris Packham’s documentary “Inside the ADHD Mind”, an expert said the incidence is really about 6%, but diagnosis rates have been about 1 - 2%. What we are seeing now is a catch up!

my son has ASD and ADHD and I worry ALOT about these questions. Makes my heart ache and my head hurt. He’s in the midst of GCSEs, not sure how he will do. Wants to learn to drive, not sure if that will be possible. I doubt he will ever live independently and worry so much how he’d manage without me when I’m not around. Horrible worries to have.

I desperately hope that I am wrong and he’ll be absolutely fine

I don’t know what will happen but I do believe cases are increasing, not just diagnosed more. I wish that there was more focus and research put into understanding if that is the case, and why.

Ds is autistic diagnosed age 4. Also my older sister has learning difficulties with autism. When she was 4 and still wasn’t speaking the dr diagnosed her with “global development delay” only now do we realise she is also clearly autistic.
I am 100% sure I am autistic too. I struggled in secondary school, was in the bottom sets, messed about a bit, skived off. Looking back I just couldn’t cope with it all. It was easier being at home pretending to be sick.
I started getting bullied in year 10, all my friends turned on me because one girl told them too, I refused to go back to school. The schools option was to send me to one of those units where the ‘naughty’ kids went, rather than to challenge the bullying. Because I missed so much school I could only take 2 of my GCSEs. This was only 2004-2005! Things have come such a long way since.

I do think part of it is just that there is much more awareness now and so more and more children are being diagnosed, children who even 10 years ago would have just been the “naughty” kids or the “strange” “sensitive” kids. I’m in my 20’s so my primary school years really aren’t that long ago, but even then I know of 2 boys and 2 girls who were in my year all through school who have only recently in their 20’s been diagnosed. Knowing what we know now and looking back it was really very obvious then that they had additional needs but it just wasn’t something that was really considered or referred then. In contrast one of my best friends teaches year 2 and a third of that year group either have a diagnosis or have been referred for assessment. There is definitely more awareness now and that does lead to more referrals, the young lad who can’t sit still, can’t concentrate and won’t stop fiddling in class would have just been a naughty boy when I was in school, now they would be assessed for ADHD.

I don’t think it’s a bad thing though, once you can identify your needs you can try to get the support to have those needs met (although there isn’t a bottomless pit of money so there is definitely issues with support just not being there on as wide a scale as is needed). The correct support right from the beginning can make a really big difference long term though, a non verbal 6 year old who struggles socially and in school does not automatically mean a non verbal 30 year old who cannot work at all as an adult.

I’m currently doing some training through my work to have young people with learning difficulties in to spend time with us so they can see opportunities (nhs) we are also learning about how we can support colleagues who need adjustments. We’ll also be supporting them with job applications and confidence.
its been a huge eye opener and I’ve learnt so much I can implement at work. If more organisations take this on itll make it easier for young people like your dc

Many of them didn't manage, though, and with diagnosis and recognition they might have avoided having to learn life skills the hard way.

Alcoholism, drugs, marriages filled with domestic abuse/servitude, living in squalid social housing with worsening mental health issues, being bullied at work/in the community, social ostracism, being exploited by a sibling or relative they relied on for support, etc.

Susan Boyle might have muddled through OK, but with an early diagnosis she could have avoided so much persecution/bullying in her local community and being taken advantage of by her siblings (who used her as a free carer for her ill/dying mother). She could have been successful and happier in life with support, instead of being limited to living with her mother into old age and unable to pursue relationships/friendships she desperately wanted.

Spend some time on WrongPlanet.com and have a look for yourself. There are many miserable, isolated, broken ND people out there. 83% of autistics consider suicide or have reoccurring suicidal thoughts, and around 40-60% will make at least one attempt (according to UK charity Autistica). The rates are similarly high for ADHD.

Compare that to the rates in the general population and it's a frightening reality - life is harder for ND people, even those patronisingly dismissed as 'high functioning'. Of course those with high support needs must be prioritised, but th suicide rates (especially among ND women and girls) are HORRIFYING. ND adults make up around 40% of psychiatric admissions.

All ND people are inherently vulnerable in one or two areas, even if successful. Temple Grandin, the most famous autistic person in America, is in her 60s now and has said she still relies on her elderly mother in many ways, though she has managed to hold down a fascinating engineering career and done a lot of autism related advocacy too.

We really can't ignore this or dismiss it with talk of building resilience. You can do that while also acknowledging there will always be a need for community support. The English are very bad at creating villages for each other, compared to African communities or European ones where children often live at home until marriage instead of being flung out at 18 and left to sink or swim. Neurodivergent children benefit from having structured support for longer than NTs. That's not mollycoddling, that's neurological reality.

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.

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)

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.

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

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.

Ditto xx

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

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.

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.

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

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.

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.