Oyez, oyez! Calling all "high functioners"!

Time and again, this all points to the need for post-diagnostic assessments following diagnosis to correctly and in a systematic way assess level of autism following the issue of diagnosis report, especially in the case of online diagnosis and for those diagnosed later in life, also to properly identify appropriate supports that may be required going forward, taking into account latest research from overseas on autism. those in charge are clearly not prepared to properly fund these efforts and even my own diagnosis in 2021, carried out online during Covid (used as an easy excuse for everything), was outsourced to a private body via the NHS, where too many assumptions about health, disability, mental health and hidden disabilities are being made, which is leading to all manner of stereotypes, myths and prejudiced attitudes, which having been diagnosed later in life myself, I was shocked to see the lack of support out there and even where the general public do not even have the basic information about autism and hidden disabilities, which along with mental health in general is not even considered “real” and is the poor relation when it comes to funding, partly due to mismanagement in bodies like the NHS, situations that have been going on for decades. Post-Diagnostic Assessments are a vital tool and are a baseline for establishing level of autism and appropriate supports, which must become a basic legal entitlement for those diagnosed and a basic legal obligation on all public and private bodies, baked into professional standards, including the NHS, especially since many more people are going to be diagnosed later in life and this is going to pose a serious problem with an ageing autistic population who are going to need enhanced support in old age, even though currently there is way too much focus on children’s autism, which gets the lions share of autism related funding. further, at an even deeper level, I firmly believe this to be an ethical and a moral issue, because it involves the “casting adrift” of a whole group of people in our times, a situation that can never be morally nor ethically justified. Aside from how the NHS was set up many decades ago in its history, I recall hearing from my grandparents generation and reading of various accounts from history of how Irish Catholic Nuns ran many of the Irish hospitals decades ago before the Health Boards and later on the HSE came in and the model that the Nuns set up was copied elsewhere as the “Gold Standard” of healthcare, including in Africa and in the US  - it was only after the nuns stopped their involvement did standards start to slip because the nuns (and Irish nurses trained by them who later on worked in the NHS) very much saw their role as being more than “just a job” it was a vocation, it was their whole life, something that also applied to teachers, police officers and many others and this was clearly underpinned by deep religious-based convictions, social norms and moral values of that time 

What sort of help are you needing?

This is in no way directed at you but I want to say - I came to the conclusion due to my own experience, with the exception of the help of one or two people, that we have to find our own way through life. I can't help feeling we live in an age where help is expected, and responsibility is taken away from the individual. Life is ultimately about survival. Having said that, we live in a society where safety nets ARE supposedly in place. Some people are able to access these, some are not.

firemonkey said:

Do they give support levels in the UK?

BeccaLovesBreakfast said:

I didn't get a support level, as far as I know, it was just 'yup, you're autistic." 

Whether or not we're given a support level to accompany our diagnoses depends on whether we were diagnosed under:

- The DSM-V classification standard, in which case a support level must be specified, or;

- The ICD-10 standard, which doesn't use them.

Both are in use across the UK, so it's normal for some people not to be given that specifier. Diagnoses made under the older DSM-IV standard also didn't include support levels.

If one is diagnosed as a child then it's pretty obvious that support needs are going to change as you grow up and change throughout life, that's no excuse for not offering appropriate support though, saying that support needs change throughout life so you can't have supposrt at all is cruel as well as incredibly stupid. So what autism is complicated get real, lifes complicated, how can we all, NT's included be told to ask for help when we're struggling, especially emotionally only to be told that your needs are to complicated?

I bumped into some charity collectors from mecap on saturday, they think they will be able to get me a post diagnostic assessment or reassessed, I don't know if they're right or not, but the official autism support people have refered me on and I've not heard anything back yet. I'm sort of expecting to be treated like a stray parcel again.

I can and do understand  about contradictions.  These are my best scores on high range IQ tests, and yet due to quite severe EF deficits I  struggle when it comes to multistep tasks. 

 168  verbal

163 verbal

155  verbal

152 verbal

151  non verbal

151 verbal

150 verbal

149 mixed

145 verbal

143 non verbal

142 verbal

140 verbal

138 numerical

138  numerical

Mark (formerly Spikey) said:

can change during one's lifetime. It's not fixed per person.

This is a really important point and as Catwoman said below.

I've probably misworded my post in calling it high functioning. It was hopefully to call in the people who I could relate to. That is those who do, to some degree, the stuff allistic people do (like work or have a relationship). The common experience to me seems to be it all comes / has come at a significant cost to one's health.

I'm not making or not making a case for functioning levels. However....

I cannot advocate for myself in formal and informal situations yet i communicate for a living in my job and am very good at it.

We can have quite contradictory experiences within ourselves.

BeccaLovesBreakfast, firemonkey No, I didn't get one either. I asked and they said it was because support levels change thoughout your life. So, I don't know why I bought support levels up 

I didn't think they did. Current thinking as far as I know is that it reduces stigma and helps stop people saying stuff like "oh but he's obviously MORE autistic than you, dear..." or something.

Do they give support levels in the UK? I was never given one. In the eyes of social services my daughter is officially my carer. Whether that  would  make me level 2 I wouldn't like to say.

I didn't get a support level, as far as I know, it was just 'yup, you're autistic." 

A very good point. The support level thing definition is good, but measuring it well is still a pipe dream.

Also - the other good thing about the 'ideal' of support level, is that it is acknowledged that it can change during one's lifetime. It's not fixed per person.

 Throwing this into the mixer. Those who can best make an articulate case why functioning levels are bad, are perversely often those with the best ability to self advocate for the support they need.  It's those of us in the vast middle of the spectrum that are least likely to get support in those areas in which we struggle.

I like the modern way of just specifying the support level. Autism is just too complicated to have a single line representing function. You can have an IQ of 190 and may be able to navigate life, but then you can still not know your emotions, be floored by some stimulus, or have been so mistreated in the past that you now have other secondary mental health conditions. So, for me, support level is a good way. (Though people can describe themselves in any way they like, as far as I am concerned. I don't think policing terms is right.)

I have an Asperger's dx. Never had a paid job. Very few friends, if any at all. Was married to someone I met in psych hospital. I also have schizophrenia/schizoaffective. The combination may be more disabling than ASD on its own. They've caused more than a few issues.

In my case my biggest problem currently is emotional regulation, which also connects directly to sensory input. If it’s too much going on I’m gonna cry or get panic attack. In fact it’s much better with ear protection, noise is not only stimuli existing. I also feel that I get exhausted much easier than other people and periodically I get a feeling like my body is stuck in a swamp (I feel like I’m not in full control of my body and I get clumsier than usual) I asked my ND colleague if he also experiences something like this and he said, he does not know such feeling and it must some neurological disorder. 

To me high functioning means that I don’t have high support needs. It’s good that this term is not officially used in diagnosis, because to me it sounds a bit offensive (I’m not sure why, maybe because of my association of this term with devices and systems) human being is somehow a device and system technically but it’s much more than that. I don’t know if it makes sense. 

good level of self awareness makes all the difference.

High functioning is a term much like "Aspergers" where your ASD symptoms haven't stopped you living your life to any significant degree.

So, you have ND traits, those traits cause some issues in your life, but you've mostly held down work, had friends, had relationships and the like.

Oh yes, except they don't really operate in North Wales, because North Wales has to have it's own organisations. So I have to have the bunch of lackwits up here.

Jeez - that's depressing. Two women in my kitchen would be that last thing I wanted.

I guess you have already looked at

autismwales.org/.../