Severe Autism,can we talk about it?

[That80sgirl]

My son has this and i feel its not as well known about as Autism in which people are less affected. This is not a thread to argue about how less severely autistic people are still affected in other ways ,we know this!its a thread to talk about how disabling it is and how hard life is coping with it, and how little support is available for kids on the severe end of the spectrum.

My son is completely non verbal, doubly incontinent, cannot sit still,does not understand or is able to follow instructions, needs constant 2:1 care at all times,severe sleep issues(ie goes days on a few hours a night)our family life is dictated by his condition.

The system is broken in helping families like ours,the support just isn't there.ive spoken about this before. I just wanted to create a thread to talk and share with others in the same situation. A place to vent and share.

Ps @mumsnet Dont move my thread to SN i don't need help,im asking if AIBU

Interestingly, and contrary to belief, Aspergers IS still diagnosed. I was diagnosed with it late last year, by a private psychiatrist. That what my medical record says, as of late 2022 (along with ADHD which I'm medicated for and is deemed as severely impactful). It's not diagnosed on the NHS but it is still a valid diagnosis. My child was diagnosed as autistic in 2019, had it still been in use for children at that time I'm almost certain that she'd have been Aspergers too.

As I said early on in the thread, there is a distinction. As an autistic, late diagnosed adult with one (likely two) autistic children I have a fair whack of lived experience with autism - but autism with no learning/cognitive disabilities or difficulties. Me, and both of my children are academically and cognitively advanced. I'm not bragging, it's luck not skill just how it our brains are, and being factual based on the cognitive testing that we've all done as part of assessments. High IQ/being bright etc does not equal zero challenges, not at all.

I also work with families and children who have varying 'levels' of autism, different and spiky profiles, and varying levels of severity of needs.

My child has an EHCP with full time 1-1 TA support at mainstream school. They do need that, they couldn't access school without it. However, their learning is flying ahead because they're properly supported. The idea that obtaining support for such a child is easy is nonsense. If anything, because my child has no learning disability and doesn't 'look autistic' (yuck) I've had to fight tooth and nail for their needs to even be acknowledged. They mask, you see. As did/do I.

I myself, also need adjustments.

But, to consider that the support/adjustments that I need as a 40 year old woman who is cognitively able, studies, owns a home, drives a car, is happily married, runs her own business, raises a family, and generally functions as a fully independent person is in any way near what a person with 'profound' autism needs is downright insulting to that person and their care team. It's wrong. That doesn't mean I don't need to make adjustments, the difference is I am able to recognise this and make them myself.

Do I have a disability? Yes. Has it massively impacted my life? Also yes. It causes my huge difficulties. Being a carer as well as a mum to children with needs very similar to my own is also enormously challenging and exhausting.

But to lump my disability in with someone who will never be able to live independently, who is unable to communicate, who cannot care for themselves/use the toilet/keep themselves safe, whose disability means that they will never ever be able to function in the way I do, is bloody awful. I do not think I am better that another autistic person who isn't as able as me. I do however think I'm much, much more fortunate.

To compare my experience of parenting children with autism, even with all of its challenges, with the experience of parenting a child/children with profound autism, is also not right.

I find it hard enough. I cannot imagine how parents of children with such profound difficulties manage. They do though, because they have no choice. Support is minimal, respite care is decimated, spaces in SEN schools are bloody non existent. It's criminal. And now, even peer support areas online which would've been a safe haven for these families, as others have said, have become spaces for the much more able to almost take over and push these families out.

There is space for everyone, but actually recognising that sometimes people need different spaces even though they have 'the same' diagnosis isn't being discriminatory, and isn't derogatory to those with grater support needs. It's accepting that not everyone one is the same, saying that 'it's all one condition across a spectrum' isn't actually useful for lots of people and it means that some of the families that need it most lose support.

I'm all for us so called 'high functioning' people being well supported, and the misconception that being able means you need little or no adjustment/support is wrong. We do need it. But our needs are very very different and acknowledging that fact renews space for everyone that needs help.

She is 6, what upset me was this was a session purely for special needs children and carers/family/friends. I get stares and tuts when out and about but I purposely choose a event that is catered for my child and I still got the stares and tuts. I would have hoped for better.
I've had a few boys around her age laughing and pointing that a " big baby" was there she was in her pushchair and flapping lots and making her random sounds. While we were in restaurant In front of their parents who said nothing. Unfortunately I expect ignorance from situations that are not in my special needs bubble of events. But breaks my heart a bit more when I'm at specific special needs event.

I have a friend in a very similar boat. It's awful, they just don't get a break and the impact on their other children, their relationship, finances, mental health is huge. They have to fight for any support and get occasional respite but it's not enough.

Her child can't be left in a room for ten minutes, and all the doors have to be locked so they won't run out into the road. The house is trashed. There are locks on internal doors to keep siblings safe.

I have one child with an ASD diagnosis. He attends a mainstream school, has a high IQ and is articulate, has a couple of friends. I am sure he will live independently at some point in the future.

I am fine with both kids being diagnosed with the same thing, but I would also absolutely be happy if there was some way to recognise the massive levels of difference in support needs between my child and my friend's child.

There are families like yours OP who desperately need ongoing practical help and respite due to a child's autism and I do agree these voices are not heard.

This is such an insightful post @thumpsthewastrel

I gather that ADHD now has various different subtypes (inattentive, ring of fire for example). I don't see why we can't have this for autism as well. A sliding scale (1,2,3 for example)seems insufficiently subtle when so many people have spiky attainment profiles.

My diagnosis, from several years ago, is that of Aspergers, but it seems that that category is frowned upon nowadays. I was going to suggest that we all gave our personal autism jolly little individual names, but then I thought deeply about what name would fit mine, and ended up starting to cry, so maybe it's not that jolly at all. For anybody.

My nearly 13_year old has a similar levels of needs to your daughter ,we don't do.autism.groups for this reason. ,my boy likes to.play with water all.day and spin to.music ,he's totally non verbal and shouts randomly he has zero.in common with many other kids who attend these groups events ,
I don't know if you are on Facebook but there is a facebook group.for parents of children with severe autism and learning disabilities,it's an American based group.but they totally get it ,it's the only autism.group im in as I have found others less than helpful.

When talking about lack of services for children on more severe end , my county had a autism charity that does lots of different activities. We were given a questionnaire restently asking us to comment on the services and charity. All the questions were relating to a speaking verbal child. Lots of questions I just could not answer. What my child thinks about certain activities, what she said about certain aspects of charity. It really upset me. There was no option to say my child is non verbal. Also they do not cater for the severe end of spectrum I appreciate it a large spectrum and its difficult to accommodate everyone. I suggested on questionnaire a event of sensory play for nin verbal/high needs/ similar children as could meet other parents with same struggles as me etc. I messaged them directly and I was told they have a leanding library which I can get sensory toys. That not what I wanted , all of my daughters toys r sensory or baby as she is unable to play with any others. I wanted an activity which would have been Relatively inexpensive. It was example of not feeling heard.

That would be helpful as I said in following message about local charity I'm stepping away from them as not helpful

I'm fairly sure this is how it's done in America.
On one of the FB groups I'm on when they discuss their children's diagnosis they use numbers.

The thing I find hardest about dealing with my childrens various disabilities is the fact that the v system that is supposed to be there to support you seems to try to sabotage you at every turn.
I feel like I am in a continual state of guerrilla warfare with various authorities( made worse by the useless local authority and social workers who are allegedly responsible for our foster child ) and anything we need to help us ( equipment and v basic respite ) involves such a monumental battle that I am worn down by it.

Someone described me as formidable the other day ! I think the system makes you that way after a while and I hate having to be so forceful in advocating for my kids but I am the only voice they have so I battle on
But it shouldn't be this hard! And it takes a toll on your mental health as the years roll on

Why? Do we call mild and severe cerebral palsy different things? I know a woman with CP who lives independently and is very successful in her chosen field, she has some difficulties but manages them, she can walk, talk, go to the bathroom etc. I also know a woman who has CP who is completely dependent on carers for her every need, she communicates through eye movement. They both have CP. No one suggests we call it something different because their severity is different.

Great post. i would add that there are also those in between you as an academically able autistic who runs a business and those unable to live independently with physical care needs.
I am an academically able late diagnosed autistic, but I’m also unable to both work and manage my home, I can do one or the other, but not both. Someone else has to run my home whilst I earn the money to pay them to run my home.
My son is a very bright, very academically able autistic who is in university, but is completely non-verbal and needs a high degree of help with daily living skills.
My daughter is doing ok at school, but has horrific anxiety so hasn’t left the house in 2 years.
My sister is an artistic savant (I don’t use that word lightly) but has a PDA profile and lives in supported housing.

it’s complicated!

There is definitely such a thing as mild autism, isn't that why it's seen as a spectrum? If you can function independently, you have less severe autism than someone who needs round the clock care.

The spectrum isn't linear. It's not mild at one end and severe at the other.

Yep similar to where.I am tbh,they always want to hear the voice of the child
but when your child has no voice and a very limited understanding of the world around them,this isn't possible.

Go on then, what is the spectrum?

Autism is known as a “spectrum” disorder because there is wide variation in the type and severity of symptoms people experience.

Definitely a reference to severity of the disorder there.

x2boys

Many many verbal children with autism aren’t able to verbalise their needs or provide a “ voice”.

I am just about to complete a social work placement in a children with disabilities team and I am so shocked at how under funded the system is and how little support there is for children and their families. This placement has broken by heart as I so desperately want to give families what they need but can't, either because of a lack of funding or there simply isn't there people out there to do the job because it's such undervalued and unpaid work. Please be aware though that I'm not in anyway positioning myself as the wounded party here as my sadness must be nothing to families who are actually living this.
My dd10 has recently been diagnosed with asd but with what would have been Asperger's at one time. She and the children I have been working with are not comparable and I don't understand why they all come under the same umbrella term.

I'm sure there not ,but I was replying to.a pp about a where group.activies want to hear from the child and was pointing out it's impossible when your child is non verbal and has a very limited understanding of the world around them, I'm talking g about from my own child's perspective,nobody,.else's child .

@TheOriginalEmu Oh I most definitely have help! I work from home, hours that suit me. My business is just me, not some huge company. I take on the caseload that I can manage, and I stick to that. DH works full time, fortunately in a well paid job and he is as hands on at home and with the children as his work allows. He also supports me!

I have a cleaner twice a week to keep on top of the house. I only have online shopping deliveries, unless it's just milk and break because taking the children to the supermarket is just... well no!

Honestly, often I pay for convenience where I can. My children are young, with additional needs. There's no way I could do my work and studies, keep on top of their medical appointments, doing EHCP reviews for them/battling with the local authority and school all the time for support, look after my own needs AND keep on top of running a house on my own.

Perhaps it is my (very evident!) black and white thinking but it's pretty straightforward to me. People need to accept that so called high functioning autism isn't mild. Really there isn't such a thing as mild autism. However it is absolutely very different from the experience of autism that the OP and others have described.

I get so cross seeing all the 'advocates' on places like Instagram sometimes claiming to be able to speak for the 'autistic community'. Community encompasses everybody in it. Where's the 'grid' for the person whose life is impacted in the way that the OP describes? Nowhere that's where, because they're not capable of that. There're not included in 'the community'. There is no voice for these families. It pisses me right off.

To the poster who took their child to the autism screening, that's awful that you were treated that way. I actually don't take my autistic child to these sorts of screenings currently because (and she's little, I am working on teaching her/helping her with this but some of its sensory and can't be helped or taught) at the moment she finds children that make loud random noises (for example) frightening, and repetitive, especially unexpected sounds cause a meltdown. So those spaces don't work for us either really.

Because you either have a child like mine in there where there are adjustments to maybe the volume of the production, lights, additional space with seating given etc etc and it works well because it's a 'quiet space/autism screening' or you have the same adjustments and children there who are free to behave in ways that are natural to them and make them comfortable, and this doesn't work for us because that in itself makes it inaccessible for my child.

Neither child is 'wrong', they have equal 'right' to be there. Their needs are just very different, and can even be totally conflicting, even with an identical diagnosis. I can't teach my child to tolerate the fear and sensory issues that yours causes her by making noises or standing on her seat ('seats are for bottoms' is a hard and fast rule for ours and someone standing on a seat would put the total fears into her) any more than you can teach yours not to make them/do that.

The difference is I guess is that I wouldn't dream of tutting at you or giving you the side eye. I'd accept that everyone autistic child in the room was equally welcome and needs to be accommodated, and if it wasn't working for my child then I'd take her out.

YANBU ❤️

It is true that the spectrum isn't linear - I still fundamentally believe though that their need to be sub categories - mild/severe are not adequate ( too binary) but needs based.
My son is not comparable to so many others with same diagnosis. He can have an independent life with accommodations

That sounds very painful. It is hard to even begin to imagine how excluding it must feel to be always deemed too high needs.

If statutory services think your DC needs 2:1 but you have to manage them alone, what exactly are you meant to do?!

....because they all share a commonality.
Sensory difficulties + Restricted interests/ rigid behaviour

Social communication needs (understanding and using non verbal/verbal communication appropriately).

They degree to which it affects someone varies hugely. It's not a linear scale, it's more up and down. I know two people who have type 2 diabetes, one is leading a very health lifestyle, does not need to use insulin due to having a diet in place and lifestyle hobbies. Another person with the same diagnosis has high blood pressure, has an amputated food and relies on insulin.