Published on 12, July, 2020
Good Evening All,
I would love to formulate a post diagnostic course for Autistics or even a book. One that contains all of the information that I wish had been available to me when I had been diagnosed. That information that you spend hours and hours foraging for in the information jungle that is the world wide web. Information that is slowly learned from time spent with other Autistics but that would be so much more convenient and time saving to have in a nice neat easy to read and digest format.
So, what information would you want to see in a post diagnostic course or book?
The Post Diagnostic assessment is the datum, the benchmark, to properly assess our support needs going forward - in all cases, this must always be a basic legal requirement - this is something that must be fought for - we need to start lobbying all of our MP’s to get the relevant laws changed in Parliament as challenging the existing laws in the courts will not achieve this objective - this applies to both private and public - there is an ageing population and many are being diagnosed later in life, it’s all very well to be focusing support on children but where does this leave adults living with autism?
As an older gay man myself, much of the struggles I’ve had with autism match those that I’ve had in the gay world and coming from an only child rural Irish Catholic background, yet despite huge numbers of LGBT’s having autism and vice versa, not only is there no support within the LGBT community for our condition, but the levels of prejudice and discrimination towards us from within the LGBT community is off the scale including here in the U.K. - this is totally unacceptable and must be robustly challenged at every level
It all comes from their purposeful, deliberate and intentional refusal to understand where we are coming from, based on their discriminatory and prejudiced attitudes, they regard our issues and our needs within our condition as being nonsense - and in their zero-tolerance and zero-patience mindset, they believe that the only way to manage our condition is by means of ultra strict and relentless uncompromising discipline in an effort (or so they think) to “cure” us - just like what happened with the LGBT community we have to get organised in demanding a proper standard of care and we have the right to demand our rights - just look what they did to gay men during HIV/AIDS in the 1980’s and during the Stonewall Inn, groups like Act Up - we have to get more radical in asserting our rights
MrSolo said:You say A, B, and C, and later look back on their notes from the conversation to see they've written down E, D, and K.
At work I have learned to follow up such conversations with an email saying “we agreed the following….”.
Earlier in my career I had many instances of people blatantly denying what we had agreed.
You may call it “neurotypical communication disorder” but I think “neurotypical dishonesty” would be more accurate.
A guide to interacting with essential services, such as the NHS. How to accurately communicate information to neurotypical people in a time-limited situation, such as a GP appointment. How to persuade them to take our problems seriously. How to request accommodations and get them.
My experience of talking to NT people is that it's like feeding information into a faulty processor. You say A, B, and C, and later look back on their notes from the conversation to see they've written down E, D, and K. There must be a technique for communicating with people who have what I call "neurotypical communication disorder" - the most helpful thing for me in a post-autism-diagnosis course would be to learn that technique.
I've been offered a follow-up appointment, but the topics suggested by my assessor to focus on are all about coming to terms with being autistic (I did that years ago, when I joined the waiting list for assessment) and social skills. I have no problems making friends, as I've found myself a social circle full of neurodivergent people, but I can't figure out how to navigate the NHS and have to rely on my ex to manage things like housing and utilities.
In addition to this course, post-diagnostic assessments could form part of this course as a module and the best ways of obtaining a post diagnostic assessment, along with other supports - we need to move towards a situation where post diagnostic assessments are a legal requirement and proper provision for same needs to be mandated in law, especially as more people are being diagnosed with autism and we also have an ageing population of people who are being diagnosed later in life
Indeed, there seems to be no support for newly diagnosed autistics. I had a course of antidepressants from my GP, which merely triggered awful daily migraines. Other than that, ineffective as it was, nothing.
It is a very variable feeling in intensity. Intellectually, I know that I am autistic, but most of the time I cope. I am able to function in society fairly successfully almost all of the time. It is generated by comparison, and the feeling that one's own particular lot is very much easier than that of many other autistics. It is not logical it is emotional in causation, ironically, I suspect it stems from empathy, or at least sympathy for others.
I get what it is, I just wondered what caused it. I'm probably being too scientifically minded though, as if a neural pathway could somehow explain imposter syndrome.
What I would say, with regards to feeling not as affected by autism as others, is this: Myself, I've always been a socially inept and obsessive Autistic who did well academically and professionally. My youngest daughter, also Autistic, is 4 and she does rock and hand flap and she is affected by her Autism quite a lot. She is still mostly pre-verbal; has HUGE sensory issues and general developmental delay. In some ways we are Autistic opposites. But yet, there are so many Autistic behaviours that my youngest engages in, that trigger memories of myself doing the same at the same age: the sentence echolalia; the repetitive head shaking to self regulate; the restlessness and being unable to sit still, particularly in church for some reason, and needing to be taken to the back room for the last half of the service. I could go on as there are so many parallels. My point though, is that it's the same old Autism in both myself and my daughter. There may be a huge difference between the level of our support needs, but Autism is Autism and I can see clearly that it is the same in both of us. It's just that we are all individuals and we will have a different combination of symptoms from the spectrum. No need to feel like an imposter.
Absolutely! We, the adult diagnosed Autistics, often arrive at our diagnosis exhausted; traumatised and completely burnt out by spending a lifetime trying to fit into a world that simply isn't made for us. Many have suffered a lifetime of sometimes severe mental health difficulties as a result of their (undiagnosed) Autism and all of us have experienced the social isolation; fixed thinking and sensory irritations that go with being Autistic. Then we finally get diagnosed and.......Nothing! Literally nothing, you're just sent back out into the big wide world with this new, enormous, life changing piece of information about yourself and there is nothing to support you with dealing with it; understanding how what it means for you; knowing how to help yourself.
I personally think that knowing and understanding your traits is the biggest part of it. How does my Autism affect me? I know my stims, I realised those before I was even diagnosed, in the pre-diagnosis information search. Kind of "Ah! that's what that's about then!" and masks, do we mask? I mask more in public now that I am diagnosed, simply because I now know that there is something to mask. Did I mask before, not really to be honest, perhaps that's where I was going wrong? Coping strategies is definitely a big one. It starts to become clear how certain things do affect us and why and we need to know how to manage that to make life more bearable.
I think it is a feeling in some people, me included, that have had adult diagnoses. We feel that we don't have some of the stereotypical traits that other autistics have - I have never rocked or flapped my hands - and are not as affected or limited by our autism as some other people. It makes us doubt the diagnosis and feel like our claim to be autistic is somehow fraudulent.
I've heard 'imposter syndrome' mentioned by a few. I've not really had it myself post-diagnosis, maybe before. I wonder what causes it?
The points that you raise are very valid. There's certainly a lot of Autistic adults in the workplace who are having to seek reasonable adjustments. perhaps for something which they have always found stressful, but never understood why. Until they get an Autism diagnosis and then suddenly it all makes sense. The sensory overload when too many people are talking at once; the overwhelm when completion of lots of tasks are being asked of you at once; the confusion when things aren't explained clearly enough to understand them.
We are amazingly varied. In fact, that is one thing that I like about the group that I run for Autistic women, the diversity of individuals in that group is immense. But yet, we are all Autistic and despite our individual differences, we do share a style of thinking and processing that is unique to our neurotype.
The 'top three traits' - I'd like to discuss that further. How about what is the 'real life' version of those top 3 traits? How does 'restricted and repetitive behaviours' translate from the textbook into reality? Because there is so much variance between Autistic individuals, how RRBs translate will vary greatly. One person might be interested in the textbook trains/stamp collections/traffic lights. But another person might like to think repetitively about a certain person; another may be interested in beads/fabric/artists equipment; another still may specialise in their subject of interest (I'm quite sure this is the case with many university professors). We can't be pigeon holed can we, those 3 letters 'RRBs' covers such a vast array of interests and behaviours that it would be impossible to have it all neatly contained in a whole library let alone one book. But yet, perhaps a nod towards the very diversity of this trait? An acknowledgement that it can present in so many different ways, we don't all just sit lining up objects all day long.
Yes, of course. The 'real' experience of being Autistic. Not just what the textbook says. The textbook does not encapsulate the essence of Autism. How do we view our own Autism. What 'symptoms' are significant to us? What are the things that we struggle with. Again it's about translating the textbook to real life. So many things about my Autism, I learn from speaking with the other women in my group, they aren't written in any textbook that I know of.
There is such a need here and a we need to have diagnosis as a gateway to treatment not the end of care.
Personally I think knowing and understanding your traits is stage 1, then knowing and understanding your stims and masks, then finally alternative coping strategies.
The thought is you have to start with knowing where you are, then knowing what you are doing and how well it works and finally looking at alternatives to see if there is something better.
It would be good to address the 'imposter syndrome' that very many people seem to experience following diagnosis.
I’d like to see a legal section. Autistic people seem to have more than their fair share of issues where they either need to use the law to protect themselves or are in danger of getting caught in a legal system that doesn’t understand them.
so i'd say you’d want sections on
I like this idea. It might be difficult because we are all so varied. Perhaps the way you lay it out would be important. I always found it quite difficult to figure out if I fit into the 'top three traits' that are usually on a list. It's only when I read, or hear the experiences that others have had, that I get a flash of memory of something that has happened to me which makes me realise that the list isn't limited to just those traits. A more comprehensive list of each would make much more sense.