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.

It’s not about needs it’s about processing the condition and how it has impacted your life. In my situation the sooner that happened the better.

And trust me re “needs” trust me nobody nobody accommodates you without a diagnosis. I’ve been in countless meetings with those who should know better and they don’t. They barely accommodate those with a diagnosis and often don’t.

But you don't have a diagnosis. How can you say you have it without a diagnosis? It's no wonder those of us who are diagnosed aren't taken seriously.

I do have a diagnosis. And before I had it for several months I processed difficulties and supporting those I have to support better knowing I too have autism. Certainly wasn’t going to park that due to some MN etiquette. It was far healthier for me to start processing things as soon as possible. Diagnosis discussion day was less difficult as a result.

I'm now pondering whether autism' is a symptom of lots of conditions, like fever or rash are, rather than a cause of those symptoms. Like i have fever (cause covid, flu, step etc) which is why so difficult. If we said to be 'rashtistic' you had to have a rash' then added some qualifiers like the rash had to annoy you and last more than 24 hours. You'd end up with a very odd condition.

@Walkaround* *and to want to reduce them to a label that everyone is supposed to understand immediately is the real problem here. yousee to me not being able to label and describe is the problem.

I agree that society generally is rubbish when it comes to disabled people, any disability. I see alot of tokenism and people patting themselves on their backs for public displays of inclusion but real inclusion and acceptance is rare.

I think it'll be easier to get the profound autism dx into general use than any other dx or descriptor because this group are so vastly different from the rest of the population on the whole. I don't want to see anyone go without support they need.

hard to believe that a failure to provide for someone non-verbal, incontinent, etc, is anything other than wilful and cruel and not really linked in any way to a change in classification of autism. I think as with most things money will be at the heart of it and everything else is used an excuse. Have you seen the news reports on some people with autism being locked up in secure rooms with very little stimulus or human interaction like prisoners because its cheaper for the LA'S as that provision comes from nhs funding rather than the LA'S making proper provision in the community with PA's and carers etc?! That should be a national scandal, if it was any other group it would be.

None of that actually answers why you needed to claim you had at diagnosis that, at that point in time, you didn’t though. Why couldn’t you think/say you suspected you had autism or were waiting for an assessment? People can still process it when they suspect they have a diagnosis.

Under the Equality Act people are entitled to adjustments without a diagnosis.

I think as with most things money will be at the heart of it and everything else is used an excuse.

I agree. Unfortunately DC whose parents know the system, can advocate for them and enforce their rights get better support. It shouldn’t be like that, but it isn’t going to change any time soon. I fear it is only going to get worse. I have 2 DC (DS3 with ASD, DS1 with other complex needs) with excellent EHCPs and social care support. They only have this because we fought for it and could advocate for them.

@JustKeepBuilding fully agree. We've had go do the same repeatedly and I'm sure we'll have to do again as full Intend ds to stay in some sort of education until 25/26 especially if he still requires ot and slt.

We plan the same.

LAs often use money/resources as an excuse. Yet they spend large sums of money each year on representation to defend indefensible cases against unrepresented parents at SENDIST. The general public would be aghast at how much they were wasting on this.

The stupid thing is even the money argument is very short sighted because with the right support in place from an early point a lot of the long term issues can be avoided.

if local authorities weren’t gabbing to be taken to court to provide the basics a lot of money could be saved.

ds plan for his ehcp isn’t cheap BUT it’s a lot cheaper than it would have been to have support him if the crisis point had worsened. We managed to cling onto mainstream by a finger nail when support let us build things up for him

It's awful and how many parents spend money they don't really have to get reports etc as evidence for the LA to back down the week before. I really hope they don't make some of the changers that were suggested last year like a la devised school list and I think forced mediation (could be my memory playing tricks on me there) rather than just getting the certificate. It's definitely just going to get alot harder.

@Cuckoosheep - “I think as with most things money will be at the heart of it and everything else is used an excuse.” Well exactly. If you want me to label the problem, that is 100% one of the labels, as I have preciously stated, and I don’t believe changing the autism label will change that. There still won’t be any money.

”Have you seen the news reports on some people with autism being locked up in secure rooms with very little stimulus or human interaction like prisoners because its cheaper for the LA'S as that provision comes from nhs funding rather than the LA'S making proper provision in the community with PA's and carers etc?! That should be a national scandal, if it was any other group it would be.” Yes, and I don’t think a label will change this either. I disagree with your last sentence, though - people with dementia are treated just the same. Anyone extremely vulnerable with communication difficulties can be and frequently is treated just the same. There is very little caring in the community and limited toleration. Most people do not want to share the burden of care, unless they are the ones with the burden already. Society always preferred out of sight and out of mind and will revert to that where a label provides the excuse, provided it can be done cheaply. Society does not want to be made to see the human being inside, and until Rainman and Chris Packham and “everyone is a bit autistic,” it was very easy not to bother to look for a human being inside the behaviours, just a problem to be kept under control. Which is all very negative - but I just don’t think it is caused by mislabelling.

*previously, not preciously

And I do fear “profound autism” as a label will still mean families being run into the ground, fighting desperately for support and understanding until they have to resort to the secure rooms with very little stimulus or human interaction you refer to as the only alternative “care” option available.

That's already happening but what it will mean is support can be targeted, research can be targeted snd thst anything that declares to wither be for people with autism or to support them won't be able to have a blanket covering. It will show the gaps and it will allow for a measuring of how included these people and their advocates are. It won't be for agencies to declare that they have consulted or coproduced etc with people with autism by working with a group made up of really vocal and differently presenting people because that will show that they've missed the profound autism group.

I may not reply now for a while as I'm going away for the weekend but I'll try to dip in and out as I can.

Wither = cater rushing and shattered so I know it doesn't read well

Well, it’s worth a try. The money will go to those with the sharpest elbows.

JustKeepBuilding

Who said I went round claiming anything. I rarely do now but if pushed and necessary I would have. Saying you’re on the pathway and close to diagnosis as opposed to I have a diagnosis is splitting hairs. The self diagnosis was for me, very helpful and 100% correct.

And sadly in my experience it makes little difference. Even with those like my dc who had a diagnosis and are quite severely impacted by autism reasonable adjustments really don’t exist even with services and organisations who should know better.

Who said I went round claiming anything.

You, as that what self ID is.

No it’s not splitting hairs. One is where a person has been diagnosed with a condition, the other is a situation where a person hasn’t been diagnosed with a condition. Would you think it was splitting hairs if you changed the condition to cancer? No one would think it was splitting hairs to say there is a difference between having a diagnosis of cancer and awaiting assessment for cancer.

Self diagnosis isn’t necessarily proclaiming it from the roof tops, many of us don’t do that with a diagnosis. You were the one who said you don’t need a diagnosis for reasonable adjustment. The fact remains it makes JS difference, certainly as regards reasonable adjustments in my experience. The only place it would make as difference is in applying for things like PIP.

I didn’t say you did proclaim it from the roof tops. Self ID is claiming you have a diagnosis you don’t. That’s not the same as shouting it from the roof top.

You were the one who said you don’t need a diagnosis for reasonable adjustment.

I did, because it’s true. See the Equality Act.

On the sharp elbows issue - it's not like the LA is desperately looking to hand cash out. I am educated and read every piece of legislation and guidance I could, visited my MP, wrote complain letters, quoted law to the SEND team and finally got some support for my mentally ill autistic child (hospitalised ill, not 'just' failing at school). As a result of my complaints I know that some processes and visible information has been changed (I've checked the location). I tried to do my bit for others at the same time as fighting for my child.
I think my point is that I get that if lots of one type of parent lobbies services might change, but they are pretty crap to start with.

@JustKeepBuilding @Ca1mingC1arySag3 could you agree to disagree? This feels like we are succeeding in a decent conversation but somethings can't be agreed upon and resolved and it would be good to keep hearing your insights.

Never once said I had a diagnosis pre diagnosis however I was autistic and did identify as autistic before diagnosis because I was.