Autism

[lolly07766]

I know there are many threads concerning this subject, I've just read one now.
I have a son with severe autism, limited communication and obvious learning disabilities, aibu to think the diagnosis/description should be changed for high functioning people, as opposed to those who have serious disabilities.

OneFrenchEgg
Yes happy to agree to disagree.

I think re services those of us who are able to should lobby for services for all. Stronger together and all that. Division doesn’t help. I think parents with children across the spectrum are often snowed under and will be able to fight at different times. It’s all shockingly shit.

Autism is a medical diagnosis, so claiming to be autistic is claiming to have a diagnosis. But as @OneFrenchEgg has requested I will disengage with the issue of self ID now.

I don't really have a side please don't be offended either of you. Thank you for moving on and parking it.

I think lobbying for services for all isn't practical if the services needed are different. Parents are going to naturally fight for what their child needs especially as so rightly said we're often snowed under with so many things/ fights. Our local area is one of the ones that's been awarded funding for a new autism school. Even though the area is in a consortium with five schools that cater for less complex children with autism our town is building one too. The only provision for children like my son in either the town or consortium are generic sen schools. My son goes to an autism school out of area (because we fought for it). It's cheaper for the LA to have the majority in area but wanted to show that just because they have the same dx doesn't necessarily mean same provision.

I did support parents of adult children a few years ago who protested at the town hall because the local supported living was being closed gradually and because there was no alternative some young adults were being put in oap homes.

Fully agree though it is absolutely rubbish across the board.

@OneFrenchEgg Don’t worry, you haven’t offended me.

Are the services required by parents of children with profound autism specific and discrete enough for them to be a single campaign group with the same aims? Are they different enough from the needs of families with children with severe epilepsy, severe learning difficulties, or anything that counts as a severe, complex neurological condition? What are you most aligned to? Is there a big enough mass of families expecting a diagnosis of profound autism to be helpful to them to be an effective lone lobbying group? If not, who are tou willing to bring to the table with you?

In case we wanted to continue

https://www.mumsnet.com/talk/amiibeingunreasonable/4750810-cont-2-autism-diagnosis-and-descriptions?reply=124189967

I tried to put a non contentious title for it

@Walkaround

Are the services required by parents of children with profound autism specific and discrete enough for them to be a single campaign group with the same aims?. I would imagine so

Are they different enough from the needs of families with children with severe epilepsy, severe learning difficulties, or anything that counts as a severe, complex neurological condition? that depends on what the criteria for profound is, but yes they are different.

What are you most aligned to? we are outliers so I would imagine it depends on criteria again.

Is there a big enough mass of families expecting a diagnosis of profound autism to be helpful to them to be an effective lone lobbying group? this is a really hard question to answer. My gut would say yes but it’s not a number you can find and because of the extreme caring load these are not people who can easily make themselves known.

If not, who are tou willing to bring to the table with you? Need, desperation, helplessness, and aching isolation. Courage, loyalty, dedication, determination, focus, endurance, and we have nothing to lose.

Are the services required by parents of children with profound autism specific and discrete enough for them to be a single campaign group with the same aims?.
I would imagine so

I’m not so sure they are. For example, things like EHCPs, therapies, DLA, social care provision, blue badges, DFG, continuing care funding… apply to families with disabled DC other than those with profound autism. Obviously not everything applies to all but that equally applies within the population of those with profound autism as even within profound autism individual needs and family circumstances are all going to be different. Unless I have misunderstood what ‘services’ you are meaning?

If not, who are tou willing to bring to the table with you? Need, desperation, helplessness, and aching isolation. Courage, loyalty, dedication, determination, focus, endurance, and we have nothing to lose. 😥

Yes but all those provisions apply to other disabilities who have a reasonably defined group for campaigning eg blind, deaf, Down’s syndrome etc

But those other groups cover the whole spectrum of needs within a diagnosis. For example, those with Down’s Syndrome don’t all present similarly and have differing needs but campaigning groups/charities etc. cover the whole range.

https://www.mumsnet.com/talk/amiibeingunreasonable/4750810-cont-2-autism-diagnosis-and-descriptions?reply=124190774

Just putting a reminder here.

I'm interested in the different needs for services. I'm thinking from what I've read that some children with autism (profound autism?) don't have a learning disability or other diagnosis, so the main or only diagnosis is autism? I think I'm heading to asking if autism would sit better as a secondary need rather than the first one? This is a question, I know it's a bit tinderboxy to ask things so I hope I don't offend.

I don’t know whether DS3 would be classed as having profound autism as it depends on the definition, but he has an EHCP with a significant amount of funding attached and therapies in, and he receives HRC/LRM DLA and social care support. For him his autism is the primary need (other than a completely unrelated medical need he also has). The comorbidities he also has are secondary.

Mine too may be hard to place too, but that’s going to be the case unless we have a glorious dx all of our own🤣

Just got back from a very depressing evening with two work friends who both have NT children. Having to listen to one of them talking about her dd was so painful as she is doing all sorts of things my dd can't do. Having to hear how pretty etc she is. No one was a bit interested to hear about my lovely girl 😢

@lollipoprainbow that sounds miserable. I’m sure she is lovely and they didn’t mean to hog the limelight.

Lollipop, it's horrible isn't it. They may worried about asking or genuinely not know what to say. They could have even been just too wrapped up in themselves to realise. I know that it can difficult, hope you're feeling better today.

In terms of dla my son is high care and mobility under severe mental impairment. Such a horrible term and the language used is just as bad if anyone has ever read it.

@Cuckoosheep they don't know she's autistic I've never let on they are work colleagues as opposed to friends so don't feel they need to know. They probably have guessed though as we all met up for a picnic last year and it was disasterous!! My dd stuck out like a sore thumb against their kids. Just made me feel very miserable me and envious. Still smarting today.

Aww @lollipoprainbow it's so hard. I don't think that even gets easier with time. They may have a idea from your picnic but may not want to say if you haven't told them so are just ignoring it? It could be with good intentions as they just don't know what to say. It doesn't make it any easier or hurt any less. Do you know anyone with a child in the spectrum too (similiar) I find talking to other parents who have kids that are impacted like mine helpful. Xxx

If only that were true.

You seem to be under the impression that cancer is a cut and dried disgnosis. It is not. And while you wait it’s often the case that they will say you have it but we have to wait for official confirmation, but they know.
same with autism, I went to my first appt and left being told the rest was a formality. But I wasn’t officially diagnosed. It’s not like stuck up a sign on my house but I told my very close family and started understanding things about myself.

You seem to be under the impression that cancer is a cut and dried disgnosis. It is not.

Err, no I’m not. But one either has a diagnosis of cancer (or anything) or not.

But I wasn’t officially diagnosed

Exactly my point!

A diagnosis isn’t required for reasonable adjustments under the Equality Act, nor for things such as support in schools, EHCPs or DLA/PIP.

BTW did you miss the part where it was requested the self ID conversation was put to one side?