you say theres no severity levels with autism but

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skibum
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18 Feb 2023, 3:53 pm

Joe90 wrote:
naturalplastic wrote:
Joe90 wrote:
skibum wrote:
Joe90 wrote:
When I watch videos on YouTube of severely autistic children or adults, their meltdowns seem sort of in intervals. I can't explain it. One time I saw a video of an autistic 8-year-old, and he was in "meltdown mode". He had ear defenders on and kept flapping his hands and shouting. He was verbal but it was noted in the description that he had echolalia and couldn't string sentences together properly. During this meltdown he kept screaming words, and looked angry, then he went calm for a few moments, then he screamed words again and flapped his hands, then went calm.
His parents described him as low-functioning in the description. He attended a special school for children similar to him.

When I was 8 I was as articulate as my NT peers. During a meltdown (although they were always called tempers or tantrums in my house) I was similar to a typical 3-year-old; laying on the floor crying but also still being able to speak clearly. There was no hand-flapping or rocking involved, and I didn't go calm in between intervals. And these temper tantrums were usually triggered by not getting my way, although they didn't occur every time I didn't get my way.
If I had a tantrum on a school morning, for whatever reason, I was still able to go to school and I was always OK once I got to school and was just as able to mix with my classmates as I would be without having a tantrum or meltdown beforehand.

My issues were mostly behavioural as a kid, such as poor emotional regulation, tantrums, hyperactivity, impulsiveness and even being hyper-social. The only autistic trait I really had was being anxious of loud noises. Then when I hit my adolescent years I had social problems at school not fitting in with my peers and being excluded and feeling lonely and isolated. I didn't have alexethemia as a kid but I went through a short phase of having it when I was at the peak of puberty (age 12-14), but that's a different topic.
Your description of tantrums when you were a kid because you didn't get your way is very important. An Autistic meltdown is NEVER caused because the person didn't get his way. It is always a neurological response to a stimuli that is overwhelming the brain function. That is a very important clue.

Anxiety over loud noises is not a diagnostic criteria for Autism. It is very common in Autism but it is not considered an Autistic trait for a diagnosis. This is also an important clue for you. I think it would be really good for you to be evaluated again by someone who knows what they are doing. I know that that would definitely give you answers and peace of mind if you able to afford the diagnosis.


I feel like the main reason I lack friends is because I'm not fun enough, and by that I mean I don't drink alcohol or go out clubbing. I'm teetotal, but because I've yet to meet another human being who chooses to be teetotal like me, I don't know if being teetotal typically has an impact on your social life as a non-religious UK citizen.
I did think my teetotalism was due to being on the spectrum, but it seems that just as many autistics drink as NTs do. There's often drunk-posting going on here.


If you like, I could PM you the reasons why I feel I was misdiagnosed. It might be a bit off-topic for this thread.

Ive scratched my head while reading your posts about it, and have kinda come to the same conclusion as Skibum...that you were misdiagnosed- if they put you into the aspie/autistic category.

You maybe SOME thing, like ADHD, but not autistic.

There is a certain type of aspie/autistic you encounter on Autism sites who (1) regret being diagnosed early in life, but (b) when they try to explain why they regret it they say self contradictory nonsense because they seem to blame the effects of the condition on being diagnosed early FOR the condition rather than on the condition itself (like if you were to blame your doctor for your symptoms of bronchitis because he diagnosed you for having it, rather than blaming your bronchitis for...your doctor having to diagnose you with it).

But you dont seem to fit that mode when you talk about resenting being diagnosed early - it actually looks as if you dont have the condition at all.

As far as being teatotal: my sister is diabetic, and doesnt drink either. But is heavily into cooking, and throwing barbacues, and manages to have a social life. Somehow someways folks manage to have friends without drinking.


Nah, because my brother has been diagnosed with it and he is even less Aspie than me, if at all.
And between the ages of 12 and 14 was when I felt autistic, more than any other time in my life. I did autistic things, such as stupidly following a group of girls around the school because I really wanted to be friends with them then when they got creeped out and told a teacher, I didn't seem to feel any emotion at all - but that wasn't like me. It was like I went through a stage of alexithymia for those 2-3 years at the peak of puberty, then I went back to my normal, emotional self with normal self-control.
You know I love you Joe, but sorry, that story doesn't convince me. And it's possible that your brother was misdiagnosed as well. Having a couple of behaviors that are common to Autistic people for just a couple of years during the awkward puberty years doesn't make you Autistic. It just makes you an awkward young teen. In order to be diagnosed Autistic, you have to have been impaired consistently in several areas since early childhood. And the impairments don't just go away. They might change a little bit as you mature but to get an Autism diagnosis, you have to actually show impairment in your daily life in multiple areas. I think it would be good for you to actually take really good look at the diagnostic criteria.

When I was getting diagnosed, I read Tony Attwood's book, The Complete Guide To Asperger's Syndrome. It's very good because it's pretty comprehensive. As I read it, I wrote down all the ways that I related to everything in that book using examples from my childhood and all throughout my life and to the present. I had a six a page document, single spaced and small font, to present to the diagnostician. I was able to relate to almost everything that Tony explained in that book not only in present day but also all throughout my early childhood and teenage years. I think it would be really helpful for you to read that book and compare it to your life experience.

I have also created an Autism screening questionnaire which is also very comprehensive. It's geared for adults and it might be used in a professional setting. It's 102 questions and I believe that if you answer positively to most of the questions then you should definitely seek out a professional Autism diagnosis. But if you don't answer positively to most of the questions, I believe that you are not Autistic. I haven't come up with a scoring grading system yet. That will be the next step in this project. But maybe you might like to take the questionnaire to see how you do on it. Just at thought.


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19 Feb 2023, 4:21 pm

I think that the main factor of mild autism (formerly known as Asperger's syndrome) is the individual having no speech delays and were as articulate as their typically developing peers from early childhood (as in no echolalia or other speech differences). Not being able to pronounce S's or R's isn't necessarily a tool to diagnose autism, as many children without autism can have this too, and it can also depend on the child's teeth and hearing.

I think that is what assessors look for, because usually when a child can talk articulately they're more likely to communicate their thoughts and form social relationships even though they still might come across as socially awkward.
My social awkwardness as a child was caused by shyness (if I didn't know other children very well) and impulsive/hyperactive behaviour (if I knew other children well enough) and not caused by communication barriers or inability to understand body language.


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19 Feb 2023, 4:35 pm

Joe90 wrote:
I think that the main factor of mild autism (formerly known as Asperger's syndrome) is the individual having no speech delays and were as articulate as their typically developing peers from early childhood (as in no echolalia or other speech differences). Not being able to pronounce S's or R's isn't necessarily a tool to diagnose autism, as many children without autism can have this too, and it can also depend on the child's teeth and hearing.

I think that is what assessors look for, because usually when a child can talk articulately they're more likely to communicate their thoughts and form social relationships even though they still might come across as socially awkward.
My social awkwardness as a child was caused by shyness (if I didn't know other children very well) and impulsive/hyperactive behaviour (if I knew other children well enough) and not caused by communication barriers or inability to understand body language.



Kids can be very articulate and meet the diagnostic criteria. Remember the 'little professors' trope, those kids were above average in terms of vocabulary and how articulate they were.


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19 Feb 2023, 4:36 pm

Joe, The more you describe yourself and your childhood experiences, the more I think that you are not Autistic. You may have a different neurodiverse condition but I do not think it's Autism.


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19 Feb 2023, 4:54 pm

Joe90 wrote:
...inability to understand body language.

I wish that ASD stereotype would go. I propose that as a hypersensitive Autistic person I notice body language more than most people in general, including NTs (online tests support this hypothesis, as well as outings with my NT husband and friends). The problems for me are that (1) I don't think the way NTs do, so might not interpret their body language as well, just as they might not interpret mine as well and (2) if I am in meltdown, which is definitely a communication barrier, nuanced actions based on an interpretation aren't part of the menu option.

I didn't know I was socially awkward as a child. I thought I was normal. It's clear from my yearbook notes that my peers considered me to be "special". I probably persisted in thinking I was normal b/c my (Autistic) mother insisted I was and whenever I suggested a potential difference to my (NT) dad he would say "everybody feels that way". Oops. No, apparently not everybody is meltdown/shutdown over a dozen times a day because of ASD-related issues (or in a structured, supported lifestyle to avoid these issues).



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19 Feb 2023, 5:10 pm

SharonB wrote:
Joe90 wrote:
...inability to understand body language.

I wish that ASD stereotype would go. I propose that as a hypersensitive Autistic person I notice body language more than most people in general, including NTs (online tests support this hypothesis, as well as outings with my NT husband and friends). The problems for me are that (1) I don't think the way NTs do, so might not interpret their body language as well, just as they might not interpret mine as well and (2) if I am in meltdown, which is definitely a communication barrier, nuanced actions based on an interpretation aren't part of the menu option.

I didn't know I was socially awkward as a child. I thought I was normal. It's clear from my yearbook notes that my peers considered me to be "special". I probably persisted in thinking I was normal b/c my (Autistic) mother insisted I was and whenever I suggested a potential difference to my (NT) dad he would say "everybody feels that way". Oops. No, apparently not everybody is meltdown/shutdown over a dozen times a day because of ASD-related issues (or in a structured, supported lifestyle to avoid these issues).


You're definitely on to something with hyper vs. hyposensitive autistics.

For some reason on a lot of things related to sensory perception autistics seem to be like an inverted bell curve, we're clustered around the average instead of within.


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21 Feb 2023, 5:05 pm

IsabellaLinton wrote:
^ ^ I agree- but my report itself shows my level of risk for each test / ability. I wouldn’t want to carry my report around bc it’s 30 pages but at least everything is specified.



You don't have to be anywhere near nuclear physicist level intelligent to realise that not all assessments are equally thorough, and that that can impact on the level of support/severity you're assessed as needing/having.
I don't think I've come across anyone in the UK who's been as thoroughly assessed as you were. I certainly wasn't. Taken as a group the average assessment of a person from the USA is significantly more thorough than that of someone from the UK.



I had to wait nearly 46 years between 1st being seen by a pdoc and getting assessed for autism. That would lead some to jump to the erroneous conclusion that whatever I had was mild. The reality - no friends and never had paid employment was anything but 'mild'.
I got treated for most of my time as a working age person with SMI, and undiagnosed ASD, as a person with major character defects. Why?- because I failed to live up to the expectations demanded of me. That resulted in poor and often very hostile psychiatric treatment by mental health professionals(something all too common among people like me) and a complete and utter failure to provide help and support for the autism.

My daughter was saying only the other day that my autism was primary and my mental health difficulties secondary to that . She has had more hands on experience with people who have ASD than the average pdoc/other mental health professional and says it was glaringly obvious from way back that I was autistic.

The quality of life I've had here with support, even allowing for a deterioration in physical health, is much better than that I had in Essex.
The dozen years between my wife dying and my moving to be near my daughter were an ever increasing descent into self neglect.
Not that I thought that at the time.

I find it very difficult to say what my level of support need is. My daughter has done a carer's assessment. She has permission from me to deal with any housing and medical issues etc that arise. I don't need help managing my finances, that's about my only adaptive functioning strength. I'm officially listed as a 'vulnerable' person. I have help to keep my place clean and relatively tidy My grocery shopping is done for me each week.



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21 Feb 2023, 6:28 pm

FireMonkey, your daughter sounds like a really lovely person. You and your wife must have been great parents. You are so blessed to have her. :heart:


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21 Feb 2023, 7:53 pm

skibum wrote:
FireMonkey, your daughter sounds like a really lovely person. You and your wife must have been great parents. You are so blessed to have her. :heart:


Just to clarify things for the sake of accuracy and honesty. I regard her as my daughter and she regards me as her father, but we are not blood related . I've known her since just before she was 10. She'll be 51 this year. Her birth father disappeared off the scene long before I knew her . At the time I met my wife in hospital , she and her brother were in care. There were a mix of understandable and less understandable reasons for that. At the time I was seen as at best fit for a group home and at a worst a long stay ward. For whatever reason, despite the age difference and difference in background, we gelled as a couple. We brought out the best in each other.

Eventually she came back to us. She had been told by a social worker that she'd amount to nothing, and probably end up on drugs and/or in prison. Through great strength of character and no small amount of ability she has proved that social worker wrong . She is the branch manager of a home care agency,and has had over 25 years working with the elderly/those with dementia/ severely autistic/ learning disabled/ mentally ill /physically disabled. I'm very proud of what she's done and achieved. I couldn't ask for a better daughter. I also have 2 wonderful granddaughters and a gt grandson and gt granddaughter.



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22 Feb 2023, 5:52 pm

There are absolutely levels in autism. I like how the DSM categorized autism into 3 levels. The levels are clearly defined based on how much support a person requires as a result of their autism.

Level 1: Requiring support
Level 2: Requiring substantial support
Level 3: Requiring very substantial support

Where as with functioning labels it was you were either high functioning or low functioning with no room in between. Functioning labels were also not clearly defined. For instance many people who ascribe to functioning labels will assume any autistic person who can type on forums like these is automatically "high functioning" regardless of how much support that person requires. A person can require very substantial support and still be able to use AAC/type. Carly Fleischmann, Diego Peña, Emma Zucher-Long, Ido Kedar and Philip Reyes are examples of this. An autistic person can also require very substantial support and not have an intellectual disability.

Also if I recall correctly, the difference between Asperger's and [i]high functioning autism[i] were Asperger's didn't have delayed speech in early childhood. I don't think this should matter for an overall diagnosis.

I found a thread on Reddit titled "[MASTER POST] What autistic people with high support needs want others to know".

https://www.reddit.com/r/autism/comment ... with_high/

They specifically wanted to hear from autistic people who have high support needs, are non verbal, appear very obviously disabled, or have a diagnosis of level 2-3 autism. Here are excerpt comments from that thread.

CriticalSorcery wrote:
We are intentionally excluded from research about autism because it is too difficult to communicate with us. The average age of diagnosis is 4 years old for girls, compared to 3 years for boys, but ranges between 3-6 depending on a number of factors including location, gender, severity, etc, yet most people in autism forums were diagnosed in adulthood.

We are severely disabled by our autism. It is visible, it is unattractive, it is violent, and unpleasant.

The concerns we have are very different from concerns low-support needs activists have. We rely on levels and labels to quickly communicate important information about our physical safety. ...

We care that we are being abused, neglected, and tortured in group homes, institutions, and residential facilities. We care that we are being deprived of therapy and support to help us communicate and live more independent lives. We care that we are stripped of our rights to vote, to get married, to have jobs, to immigrate, to make choices for ourselves whether it's where we will live or what color shirt we want to wear. We are 3 times more likely to be victim of violent crime and 4 times more likely to be sexually abused as children. Nearly half of all people killed by police in the US are disabled, many autistic. ...

For us, meltdowns are not internal, they are terrifying and violent and painful. So many posts I see "How do I know if it is a meltdown?" or "I had an internal meltdown during school and no one even knew I was upset". I have broken my ribs against the arms of aides who held me down while I was having a meltdown: I think we have different definitions of the word.

Always it is talked about the financial barrier for diagnosis, which is real and problem. But my roommate's AAC device now works on a subscription service, and she needs to pay $100 every year (additional to $300 for the app) for the privilege of being able to communicate when she needs to use the bathroom.

There needs to understand the privilege in being "high functioning", "high masking", or low support needs.


linguisticshead wrote:
A lot of things that the autism community worries about just isn't something for us. I don't have a choice to like or not the puzzle piece, I have to wear a lanyard with it because it's what people recognise the easiest as an autism symbol so I can get support if something happens in public. I cannot choose to not disclose my disability, I have to. Either way, people can tell. I cannot choose to get diagnosed or not. I cannot worry about the impacts an autism diagnosis can have on my resume.

We are not the same. The disability that makes it hard for me to talk, live independently, work, have friends etc is very different from what you experience. You might think it's not necessary to label us as levels because "it's all autism". It's not that easy. Not that simple for us. ...

If making friends is hard for you, it can be 10 times harder for us. Because of my speech impairments people don't want to come close. Because of my stimming, people go away very easily. They are scared of me. I can't have a normal friendship because talking makes me overwhelmed. All I can do is usually sit by one's side quietly and enjoy their company. More than that can easily make me overwhelmed."


xRVA_SH1TP0STERx wrote:
I'm level 2 and I think the most important thing for people to know is that autism IS a disability for some of us and there's nothing wrong with us saying so. If you don't want me to call you, specifically, disabled then I won't but if you are level 1 I don't think you really have a place to dictate what terms people who are more significantly impacted by the disorder use.

Also know that if you are low support needs or just minimally impacted by your autism in general, then sometimes you need to back off and give us the chance to speak on issues that autistic people face. People who are level 1/low support needs seem to be more vocal because it's quite literally easier for you to speak on behalf of the community, and there are times where that's appropriate but you should probably think about whether you're talking over other people or speaking on things that you don't understand or experience.


VPlume wrote:
The thing that I wish others understood is that for level 2/3 people, having someone care for you is not a "privilege" for the wealthy. It is a literal necessity of life. I need help remembering to drink water so I don't pass out from severe dehydration, go to the bathroom on a schedule so I don't have an accident, cook food, pick food out, pay bills and generally manage money, to know what to do in an emergency, to know when something is an emergency, to go to bed, to be out in public in general, to speak for me a doctors or the bank or the store, to ensure that I take my medications and take them properly, to not live in a complete mess, to drive or accompany me on public transit or walking so I don't get lost. If I did not have a carer, live in an institution or have family that could care for me, I would be thirsty, hungry, covered in urine, homeless and eventually, dead. Telling me that I an lucky to have a carer because you would love someone to cook and clean for you, drive you around and keep you company is not the same. If you don't have someone to take care of you, it has been like that for more than a week, and you have not died, you do not NEED a carer in the way that someone who is level 2/3 does.

I can't mask. Stop telling me that I am lucky because I don't understand the mental health issues that come from masking. If you can mask, it means you can go to the store and buy yourself say, menstrual products, all by yourself and no one phones an ambulance or the police. I would gladly trade having a week long meltdown for the ability to attend a colonoscopy appointment without my carer. ...

I need accommodations for EVERYTHING so I always have to disclose. It's not like if I don't get an accommodation I'll have a meltdown after - I am going to have the meltdown or the shutdown right there and be unable to participate. I have a job, BUT I have a lot of support to do it. My carer helps me plan out everyday, prepare what I will say, will do, drives me there and remains available at all times in case I need help. I love my job and am proud to be able to help autistic kids in my role, but I feel like being able to have job is a huge privilege. However, I have to disclose my autism at hiring because I can't hide it, which means I face lots of discrimination.



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23 Feb 2023, 4:51 am

ilovepalmtrees wrote:
There are absolutely levels in autism. I like how the DSM categorized autism into 3 levels. The levels are clearly defined based on how much support a person requires as a result of their autism.

Level 1: Requiring support
Level 2: Requiring substantial support
Level 3: Requiring very substantial support



I have no problem accepting there are different support levels. For me it's a case of what equals- support,substantial support, very substantial support? I need concrete things to attach it to. It's the same with all the talk of 'spoons' and disability.

All I know is that when living in the high rise in Essex(without support for weeks on end) I'd spiralled into an increasing state of self neglect . Not that it dawned on me that I had till I'd been here in Wiltshire several months. At the time I was totally blase about it.



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23 Feb 2023, 8:18 am

CriticalSorcery wrote:

There needs to understand the privilege in being "high functioning", "high masking", or low support needs.


I do not think that being "high functioning" is much of a privilege. Being able to do things, I worked full-time for 36 years, can be more stressful, more anxiety-making and more inducing of poor mental health, than not being able to do things. For most of my life I thought that other people had similar problems to me, but were much better at coping with them. I eventually realised that I was autistic (clinically diagnosed) and that for the allistic majority, my daily problems just did not exist. Spending a life just about coping, and holding oneself up to unreasonable allistic standards can be very harmful.


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23 Feb 2023, 8:50 am

Masking itself is not a privilege.

Having to be forced to mask without a choice is still much of a lack of choice.

Even IF said masking 'opens doors', there are still unpleasant consequences -- different from those who cannot or don't mask, but an unpleasant consequence nonetheless, especially done against one's will.

Yet those who cannot mask has lesser choices than those who can mask -- because unmasking may eventually be a choice for them.

Even if those who cannot mask never have confronted of the unpleasant consequences of having to mask and maintain, not masking does still bring unpleasant consequences potentially more severe.
Different, but nonetheless an unpleasant consequence.


Having a choice to mask AND unmask IS a/THE privilege.
The real privilege is to get away with both ways of masking -- passing, blending without worry -- and unmasking -- expectations or exemptions of judgments.


From, me -- a ridiculously privileged autistic. Though not a really privileged person mind you, which is an entirely different premise.


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23 Feb 2023, 9:33 am

This isn't a competition. We shouldn't be making it one.

Each Autistic person's needs are equally valid and should be met. People who need carers 24/7 should have them and should be as respected as anyone who can live independently and should be cared for with absolute dignity and respect. Autistic people who need support in different ways and on differing time schedules should also be cared for as they need to be with absolute dignity and respect. As a community, we should not be arguing about support needs and whose support needs are more valid. They are equally valid. They are just different.

Autism is not a disease, but I like to use cancer as an example. There are people who have cancer who are treated on an outpatient basis. They go to the hospital once a week or whenever their treatment schedule is, they have chemo and then they go home. One of my family members does this for his cancer. But there are also cancer patients who have to be in the hospital 24/7 and who are in need of 24/7 intense care because of the nature of their cancer.

The cancer that my relative has isn't "mild cancer." If he is not treated the way that he needs to receive treatment it will kill him. People who are in intense hospital care will also die if their cancer isn't treated the way that it needs to be treated. But they don't argue with each other about whose support needs are more valid. They are equally valid.

Now the difference between the cancer example and how it works in the Autism world is that Autistic people with support needs that are not as visibly obvious, or what people think of as "lesser" support needs, are told that their needs should not me met at all because there are Autistic people who have "greater" support needs. Or people try to convince us that our needs are not real or that they don't actually exist. I think that this is the actual problem.

It's as if the person who needs cancer treatment as an outpatient were told, because other people with cancer need 24/7 in hospital care, we will insist that you don't need any care or treatment at all because your cancer is "mild." So anytime you ask for help with your cancer, you will get told, "No, your cancer is 'just mild' so you don't qualify for any kind of help at all and you just have to fend for yourself." Or what if that person were told, your cancer isn't "cancerous enough", or your needs shouldn't be met because we don't believe that they exist? This person will still die of cancer. He might not die in a week like the person in the hospital will if his treatment gets cut off, but he will still end up dying of cancer and his life expectancy will be cut way short and he will suffer greatly along the way.

It is important that severity be understood in more than just one way. Do Autistic people who are visibly extremely challenged deserve all of the help they can get? Of course they do. And as a community we, who are able to communicate in ways that nts can easily understand, need to fight alongside them and help articulate what they tell us that they need so that we can support their efforts in being treated well and in being able to thrive. But on the flip side, those of us whose needs and severity levels are not visibly or readily obvious, also need to be supported in the ways that help us and keep us alive and thriving. If we could stop making this some kind of sick competition and support one another, those who are more able to articulate supporting those who can't as well as those who are more obviously severe, understanding and supporting those who are not as obviously severe, we might be able to make a lot more progress in getting society to change.


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24 Feb 2023, 6:40 am

^ I don't see it as a competition. I do it see it, as with mental illness, as a situation where resources are thin on the ground and it's a post code lottery as to the level and quality of help and support you can get .

I first saw a pdoc c October 1973 . First hospitalised May 1975. Asperger's dx May 2019. That can not be judged as acceptable even if the ASD was judged to be level 1 . My daughter who has done quite a bit of work with autistic people has said that my primary issue has always been the autism, and failure to recognise that worsened secondary mental health issues. That's not something that makes me resentful and angry towards other autistic people , except when they play the 'It couldn't have been that bad to get such a late diagnosis' card. It does however make me feel a lot of negative things about a system that allowed that to happen.



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24 Feb 2023, 9:10 am

skibum wrote:
This isn't a competition. We shouldn't be making it one.

Each Autistic person's needs are equally valid and should be met.


1) No it isn't. It is a discussion or dialogue. It was posited that being a 'high functioning' autistic was a privilege in comparison to the situation of 'more overtly affected' autistics and I refuted this. This is as old as Socrates.

2) Yes indeed.


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Retired biomedical researcher - molecular/cell biology of tropical disease/parasitology.
Diagnosed with ASC, GAD and social phobia.