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.

@Scautish how have I minimalised or defined your struggle? The only interaction I've had with you is you calling me ableist.

Is it because I've said that people with profound autism have more needs than someone who is autistic but not profound? How is that inaccurate?

Is it the use of high functioning? I did state that I couldn't think of better wording to get my point across.

Acusing me of being ableist because we don't share the same views is censoring. Essentially you're relying on me backing down through embarrassment or not willing to question whether you are wrong because you say you are disabled. Having an opposing view doesn't make me ableist. Calling it me as a means to stop me engaging is bullying though.

Occupational therapy and speech therapy.

Actually Cuckoo by its very nature and what is needed to get a diagnosis autism means a bigger likelihood of poor mental health. 70% of those with autism have diagnosed mental health difficulties and one can safely assume there will be masking involved with the 30% not identified.So no they’re not really separate.

With learning difficulties only 18% of those who are autistic have a learning difficult and that will include Dyspraxia etc that can often interlink with autism.

Trust me my daughter does not touch your child’s money. She is in and out of hospital and receives generic paediatric and CAMHs cares. You aren’t given priority to be admitted to paeds if you’re autistic and ditto Cahms, it’s down to need as it’s about saving lives. Sorry to disappoint but she and others like her will get that care regardless of their or your child’s autism diagnosis. That said her autism makes the risks higher with her condition and one would assume quite rightly that this is remembered. She doesn’t get social care. And we don’t get help as a family even though autism has had a sledgehammer impact in every way.

“people who have no personal insight into autism generally understand autism to be like the good doctor or Sheldon etc” Actually women and girls with autism experience this too .My daughter flew under the radar which lead to her catastrophic mental poor health simply because she was a girl and didn’t present like Shledon. There is very much a focus within the autistic world on raising awareness re autism in women and girls alongside keeping those with autism out of inpatient.

There is absolutely a need to keep the grouped DX. Profound just means great or intense and yes many many autistic people without learning difficulties have “severe autism” and are impacted all the time. You have no right to describe anybody as having less severe autism simply because they don’t have the learning difficulties your child has. They can still be “profoundly impacted."

”The term "profound autism" is now being favoured to distinguish.” No I don’t think it is. It was mentioned briefly in a Lancet report and has been seized on by activists. We’re seeing quite the reverse.

” I don't mind others having the same dx, I just want them to have similar presentation, needs and required support to my ds.” Well you’re not a diagnostician and thankfully don’t get to choose or dictate.

“ Why would you want your child to have the same dx as mine when they clearly present in different ways by your implication? Surely it would be easier to have others have a better understanding of her and her needs more easily?” All people with autism present differently,even those with additional learning difficulties. Quite rightly autistic people are diagnosed as individuals. I do not want anybody on the autistic spectrum to to have their diagnosis denigrated. It would be impossible to do anyway as taking learning difficulties out of it profound is impossible to define.

How exactly can you get a diagnosis if you simply want one? You having a completely false belief does not make it truth and belittling the diagnosis process in such a way is pretty appalling alongside ridiculous. Particularly so given that you have nothing to back up your insulting and widely damaging claim.

Learning difficulties and learning disabilities are not the same thing.

Quick U.K. google says 60-70 % of people diagnosed with autism also have a learning disability. Although I suspect that has changed recently & will be reducing due to changes in diagnostic practices. However it is a significant number. Dyspraxia is not a learning disability.

Everyone talking about learning difficulties - do you mean learning disabilities? Like IQ under 70?

Oh sorry @Sindonym your post wasn't there til I refreshed

www.autistica.org.uk/what-is-autism/signs-and-symptoms/learning-disability-and-autism

It’s actually 40%. The fact remains due to the very nature of autism you’re more likely to have mental health difficulties. You can’t say they’re separate.

That must partly be because all autistic people can have mental health problems, but only those with an iq below 70 have an iq below 70. Sadly its not an either or.

Oh really? I was told that I'm not entitled to any help? Or is that just for children / a post code lottery?

Do you need speech and language or occupational therapy?

Probably post code lottery.

We were offered a group session or a wait for an individual session if group zoom didn't work.

The latter yes. But there's a refusal by social services to help because of how ignorant their understanding of Autism is. I was referred to their mental health team. I don't have a mental health condition.

Speech therapy is also about communication and as autism is a communication disability....

It's been bloody useful.

Approach your GP about referral to your local occupational therapy services. Social services wouldn't usually get involved with OT. Mental health services sometimes have occupational therapists within them as well.

Can we have a list of all the services those of us with an autism diagnosis take from those with a learning disability please.

I can't believe this thread. Someone upthread has dismissed the mental health difficulties of a child with autism and said that they are separate from their autism. Yes, you can have one without the other, but poor mental health can not be sliced off people with autism and kept in a separate jar. Poor mental health is one of the most significant difficulties faced by people with 'high functioning' autism and their mental health is poor because of the difficulties involved with being autistic in a world designed by NT people.

My dd became deeply depressed and suicidal because she could no longer cope with the social expectations of secondary school, she is absolutely riddled with anxiety - this is caused by her autism, not by a chemical imbalance or a bereavement or PTSD, or one of the causes of anxiety and depression in NT individuals. It is not separate.

With a wider lens, it is highly typical for mental health difficulties to be dismissed over difficulties that are more physical and/or visible - this is an issue in general, not just related to autism. If you are NT you only see the impact of a person's autism from the outside, so I suppose you wouldn't understand why someone who has been to university and has job may struggle on a day to day basis - it is not visible to you. Parents of autistic dc who have autism themselves have a greater insight, but even then, you still only have your own experience and what you can see from the outside. The bottom line is that we should believe people when they say they are struggling and not dismiss them because they don't fit your personal idea of autism.

And other organisations say higher www.learningdisabilities.org.uk/learning-disabilities/help-information/statistics/learning-disability-statistics-/187690

as I said it will drop as a percentage because of the change in diagnostic practice - but it remains a significant number.

To be honest it’s practically impossible for anyone to see a speech and language therapist these days and sensory OTs (the most useful ones for autism) are rare as hens teeth. My non-verbal son has always been too ‘bad’ to be entitled to SLT (well without a battle) so we have always had to do a lot ourselves or pay for short blocks of private therapy to get us going.

The role of OTs and SLTs is very undervalued within the NHS (probably no surprise that they are both female dominated professions).

As an adult being able to come under the LD team is usually more helpful as they are very used to working in a person centred way. But they gatekeep heavily and there is quite a lot of rationing of services within those teams now as well. MH services are overwhelmed and usually
do not have the skills to support people with autism.

The trust I live in don’t commission any sensory OT at all. We had a fantastic OT when he was younger who managed to word things as being for the physical side while also making sure I knew the sensory side too. But she left to work in a trust that would let her provide the sensory support.

now the general response from OT/physio/sALT is “we have done all we can for now come back in a few years when things get worse”

Good morning @Ca1mingC1arySag3 ,

Autism is a social communication disorder/ condition it is categorically not a mental health condition.

Autism is not a learning disability either.

Leaning disability and mental health needs can be co-mobid but they are not part of the autism diagnosis.

Your child's mental health needs are mental health needs. Not everyone with a diagnosis has mental health needs.

You have presumed that my don has a learning disability, actually he can't have one diagnosed due to the nature of his presentation. The way iq is calculated means that his would be screwed by outliers.

Profound is being used more and more where required. I'm curious what "activists" have seized the word. Do you parents who want an easier way to describe their child?

You state that you do not want anyone with autism to have their diagnosis denigrated. Can you not see that when the diagnosis were combined, those used to saying autism and it meaning in the classical sense did have their diagnosis impacted as essentially the criteria and definition of their diagnosis changed.

The subject of the thread is about grouping people with similar presentations, it's part of the discussion. Autism is now an umbrella diagnosis which embodies many different presentations. Having a preference to have one which easily describes my son is common sense because if I'm being honest it does make life harder. Families like ours have to deal with issues and problems which are drastically different to families who have a loved one with what was asperges/ high functioning autism. Very often discussions are shut down about the issues we face or just aren't included.

I never said a diagnosis could be gotten if I simply wanted one, I said I know enough about autism to get one if I wanted. I don't want one but this is similar to anyone who decides that their own presentation fits an autism dx and the seeks one out. This is shat many people are doing especially adults who don't interact with outside statutory agencies in their normal lives eg schools.

As for giving you a list of where funding is impacted, I would love to but I can't. Surely given the state of the nhs you can realise that there is only finite resources and that the inclusion of other dx in autism creates more people accessing services ring fenced for that dx. In addition as the number of people getting a dx is increasing and the number with not classical autism is increasing greater than those with, services will be screwed to meet those needs. Further to that research is being hindered as projects like the autism genome project become subject to not being inclusive enough.

My sons dx is autism however he is too complex or profound to access some services

What impact would splitting the dx again have on you or your daughter? I'm asking as I'm wondering why your so against it. You speak of proof but you've yet to say why you'd be against it. I know that as previously posted the dx were grouped as people with aspergers/ high functioning found accessing services more difficult or they felt their dx wasn't taken seriously (in addition to the Nazi links). Grouping them meant they could back up their dx by saying it's autism ad it being understood to be a disability because the original dx was for people with classical autism.

I'm aware that these conversations are difficult and with some posters rigidity of mind and theory of mind may play a part in the conversation, so I am at least trying to be polite. Maybe you could lay off the name calling in return and allow a proper discussion on the subject?

Does DS not have an EHCP? If he does therapies can be included in there in section F, so then they must be provided. If the NHS can’t or won’t provide it the LA must commission independent provision. You don’t need to self fund therapies. If he doesn’t sounds like you need to apply.

Same for you Sirzy. I think you’ve said previously your DS does have an EHCP, so therapies can be included in there. Including sensory OT even if your ICB don’t commission it.

Name calling Err where?

And please don’t stereotype thankyou.

You absolutely could not get a diagnosis unless you are autistic. I’ve been through the process 3 times with myself and my children you haven’t. So declare as much as you like it simply isn’t true and you’ve given nothing to prove what you are saying.

You don’t get any services with a diagnosis you only do if there is a need. So unless my child had a learning difficulty we are not going to be accessing the same services and your child is in no way disadvantaged by mine. If your child needed a paediatric bed and their need was higher you’d get it over mine. If my child was medically at risk higher than your child she’d get it over yours- as it should be. She was on the same waiting list with Cahms as everybody else and didn’t jump the queue simply because she is autistic. Sadly it took a suicide attempt to get her taken seriously.

So re services still not seeing how my child’s diagnosis is impacting your child. Everything is based on need.What services are you trying to access that she is impacting?

He does, we have OT and SALT input but the plan as it stands has them come in and give the school the resources and cover it this way.

I am currently filling in the annual review form and going to push to get sensory OT written in either through school or personal budget.

"You don’t get any services with a diagnosis you only do if there is a need."

But how does anyone know if you have a need if they haven't actually assessed you?