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bluemoon0211
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25 Jul 2021, 9:27 am

Hi

My best friend recommended this site to me. I am on a long LONG waiting list in the UK for an Autism assessment.

Around a year and a half ago, I had a slight incline that I could be Autistic, so I started researching things. I confronted my mother about this and she refuses to accept I could be Autistic. I thought she’d be rather accepting since my younger sibling is Autistic too, but she disagrees and just thinks I am “abnormal” and “different” and that I’m “searching for another label”.

This most likely isn’t the case. I’ve looked at childhood experiences, school experiences and present experiences and analysed various Autistic traits. Over my life span, I show many Autistic traits! Some of the traits have died down from childhood and some have appeared in adulthood.

I am really REALLY anxious about getting a “no” from professionals and I hate how I am currently feeling. I don’t want to say, “I am Autistic” and then realise I am, in fact, wrong, but I also don’t feel neurotypical/allistic or what others deem “normal” (Side note - I hate the word normal and I don’t feel like there’s any such thing as normal!).

Does anyone have any tips on how to prepare mentally for the “yes or no” answer and what to when I’m super set on wanting a yes, but knowing I could get a no? (I don’t know if that’s worded well apologies!)

I also want tips on self discovery and self diagnosis - I know some people disagree with self diagnosis and I still don’t know if I feel 100% comfortable deeming myself Autistic just off my research, but I would really love advice in any form!

(emotion managing tips would be really beneficial too :D )



Harry Haller
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25 Jul 2021, 10:28 am

No wisdom at all but Welcome, glad yer here
Recently found this site, these folks are great :D



Trogluddite
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25 Jul 2021, 11:07 am

Welcome to Wrong Planet from "oop north" in Yorkshire! :D

Firstly, I'm glad to hear that you got yourself onto that waiting list; that can be a big hurdle for some people, and the fact that you've got that far is a pretty good indication that something is going on which needs looking into.

Secondly, don't worry about using WrongPlanet as a self-diagnosed person. As long as you're honest that this is your situation, it's no problem here at all - aside from anything else, it has to be that way because there are so many parts of the world (including in the UK!) where getting an assessment is almost impossible for many people. In fact, you don't even need to be autistic at all; there are people here with other conditions or none at all, either because they find some of the advice here useful anyway or are just curious.

And that leads to my main bit of advice. Join a community like WrongPlanet and get talking to other autistic people.

Oh, you already have. Great! :lol:

The most important thing is that whatever labels the "experts" in lab coats might or might not apply to you, if you find the companionship and advice that you find here, or elsewhere, beneficial, then that is totally valid and no-one will begrudge you joining in. Likewise, if your posts here help someone else out (even a first post can help people to see that they're not the only one suffering a long, stressful wait), then that is also totally valid. Your quality of life matters far more than the diagnosis. To be totally honest, here in the UK an adult diagnosis doesn't really help with accessing benefits or social care as much as you might think, and my experience is that whatever you can learn from people who actually live autistic lives will likely be far more significant in the long-run.

Going through the process of getting yourself a referral for assessment, apparently without much support from your family, surely won't have been easy. People don't generally put themselves through that unless their concerns about their psychology have some substance: if it should happen that the assessors don't think you're autistic, they will very likely point you towards some other likely source of whatever difficulties you're facing. Getting the right diagnosis is far more important than getting an autism diagnosis. And again, you're welcome here in any case - a shared experience is a shared experience, no matter what our medical records might say!

Finally: I won't patronise you by telling you not to fret during the wait - I know that it is utterly impossible not to! (I waited a couple of years - and wasn't diagnosed until 45). However, there's plenty to get up to here if you need some distraction; and if it starts getting under your skin too much, you're welcome to visit the "Haven" section for a good-old rant to a bunch of people who have some idea what you're going through.

Best wishes.

PS: I noticed you identify as non-binary: which pronouns do you prefer? (maybe worth adding to the commenty bit of your profile?)


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Mountain Goat
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25 Jul 2021, 11:18 am

Hello and welcome to Wrong Planet.

I am on the list waiting to be assessed myself. For me it involves a lot more then just wanting to know as it is now tied in with a few areas, one of which is dentistry. I am having to have fillings done without anisthetic because I am not allowed to be forward to get knocked out by the specialist unless I am classed as having a dissability, as last time I had to wait five years just to have a tooth removed and my Mum had to wait eight years. We both react to the injections, so this is just one element where I need to be assessed as if I am on the spectrum, I am allowed to be seen by those who I need to deal with me without having a long wait. (I am not allowed to go on the list to be seen for a filling so is why I have to go without anisthetic which I am not looking forwards to).
Also I am trapped as I reached a point where I can't work due to repeated burnout/breakdown situations. Had I known about autism and been assessed earleier I would have avoided these and I would very likely be financially independent like I once was.
I feel trapped because I can't cope with getting a job so I am now on benefits, but the benefits people are waiting for me to be assessed as they really need to know and I need to know and have it confirmed if I am on the spectrum or not and if not then I could then do with seeing a psyciatrist to work out what has been going on... So everything from different directions hinges upon having an autism assessment and working out what to do from there. It is like my life has stopped or is on hold. Mind you, it was stopped anyway as I had given up all hope and was in a desparate situation and I really was not expecting to live much longer before I somehow managed to ask for help. (I never asked for help before because I never knew how to explain what I was going through as I did not have a clue what was going on with me!)

As far as the autism bit, it has been a long story where I only really discovered I may be on the spectrum about 5 years ago though it took me a few years due to mindblank to ask a doctor. Like you my Mum was in denial but now she knows more I have realized that she is very likely on the spectrum as well and my aunt (Her sister) and their mother (My grandmother... Both of which have passed away and so has my Dad and strangely he had noticeable traits. Is it common for people on the spectrum to marry unknowing they are?)

But anyway. I did not know a lot, but I managed to ask my doctor if I had aspergers syndrome and that was in late april 2019. I expected a yes or no answer and she could not give one. She had little to go by but she put me forward to the autism people to see if I could be accepted on their list. They were very interested in me and put me on the list which is where I am now.

If it wasn't for the autism teams help and a family friend who works for Mind, and the help and support of the people in my local jobcentre and others I would not be on benefits and I would be pretty screwed by now to be honest. I had gone for a few years on no income one and off, or a low income when I could work (Which was less and less hours due to issues... It ended up me working and making a loss at one point as the work I could manage in a shift was less then the commuting costs).

I do think it is a good idea to be assessed though even if you are not struggling and here is why. If you are on the spectrum, knowing you are means you can have a different approach so you avoid some of the situations that I have ended up in. I lost a very good job and my house and a lovely classic car and a camper etc... My life collapsed around me when I hit the first burnout/breakdown and have hit several since. If I had known I could have said to my employer "Look. I am going through a tough time. I have to have a break" and in a few months time I would have recovered and be back to my normal self. Because I did not know, I pushed through and had a complete breakdown/burnout situation which hit hard, and I could not get any help because I simply did not know what was happening to me! All I knew was to quit the job each time I hit burnout to preserve my life. I would have never hit these had I known I was on the spectrum (If I am on the spectrum if this all makes sense?). So yes. For this potential reason, andfor the reason that you will always be curious ans asking yourself if you are or if you are not on the spectrum...


It is up to you. If you are getting along fine, then knowing is not needed so much. When I was your age I was just an "Odd" person who did my own thing in life. I was kinda coping as long as I was allowed to be me and I was not being bullied.

It is like the Matrix moment isnt it? :D


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25 Jul 2021, 11:47 am

Welcome to WP! I think you've already met some nice people here. And Trogluddite's advice is good.

And I fully understand wanting to know for sure, one way or another. That was a primary reason why (at the age of 64--I have a pair of boots twice as old as you!) I wanted to get a diagnosis. I didn't want to have to constantly explain that "I think I am..." or "I seem to have many traits of...".

And if it turns out you are not on the Autism Spectrum...well the most important label to have is the correct one (and, like Trogluddite said, no specific label is required to hang out on WP--though "nice" would be nice).

If you have not already found these than you might find them interesting:
-- Autism-Spectrum Quotient Test
-- Aspie Quiz


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bluemoon0211
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25 Jul 2021, 12:32 pm

Thank you to everyone who’s replied. Your comments have been really helpful for me and I really appreciate them! :D (I’m still getting use to WrongPlanet and I don’t think I’m able to reply to individual comments :? )



diagnosedafter50
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25 Jul 2021, 2:29 pm

bluemoon0211 wrote:
Hi

My best friend recommended this site to me. I am on a long LONG waiting list in the UK for an Autism assessment.

Around a year and a half ago, I had a slight incline that I could be Autistic, so I started researching things. I confronted my mother about this and she refuses to accept I could be Autistic. I thought she’d be rather accepting since my younger sibling is Autistic too, but she disagrees and just thinks I am “abnormal” and “different” and that I’m “searching for another label”.

This most likely isn’t the case. I’ve looked at childhood experiences, school experiences and present experiences and analysed various Autistic traits. Over my life span, I show many Autistic traits! Some of the traits have died down from childhood and some have appeared in adulthood.

I am really REALLY anxious about getting a “no” from professionals and I hate how I am currently feeling. I don’t want to say, “I am Autistic” and then realise I am, in fact, wrong, but I also don’t feel neurotypical/allistic or what others deem “normal” (Side note - I hate the word normal and I don’t feel like there’s any such thing as normal!).

Does anyone have any tips on how to prepare mentally for the “yes or no” answer and what to when I’m super set on wanting a yes, but knowing I could get a no? (I don’t know if that’s worded well apologies!)

I also want tips on self discovery and self diagnosis - I know some people disagree with self diagnosis and I still don’t know if I feel 100% comfortable deeming myself Autistic just off my research, but I would really love advice in any form!

(emotion managing tips would be really beneficial too :D )

Sorry you are on such a long list, but the bright side is that you ARE on a list.

Please excuse me for sounding offensive to your mother, to me, saying you are abnormal and "just different" sounds toxic.
Maybe evaluate your relationship with your mother. My mother was given a questionnaire to fill out. Drugs clouded that assessment in 2015, I got reassessed last year, they used the same info they had on file plus additional info from me.

I am no diagnostician so I cannot say whether autistic traits come and go, I know special interests and obsessions come and go.

It is ok to feel anxious about being told NO when you believe you are and want an explanation as to why you have struggled in life.

I don't think there is such a thing as normal.

Tips? While online tests are not diagnostic, take them to assess yourself.
Think of comments people have made to you in the past that might point to autism, for example, a work colleague once implied I did not know when a conversation had ended, (Social cues)

I self-diagnosed for a while, why should I meet the demands of NT life if I don't feel upto it?
Why should I feel bad because I don't like vagueness?
Why should I see myself as slow-witted, vulnerable, boring, when none of these are true?

Emotion regulation.
I am using Internal Family Systems (founded by Dr Richard Schwartz) to help regulate my emotions, which is hard as I also have borderline personality disorder.
I am getting a lot of support online via Facebook and zoom groups.
Could you try that?



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25 Jul 2021, 11:13 pm

bluemoon0211 wrote:
Does anyone have any tips on how to prepare mentally for the “yes or no” answer and what to when I’m super set on wanting a yes, but knowing I could get a no? (I don’t know if that’s worded well apologies!)

Figure out why a 'no' would bother you so much. Figure out why you want that 'yes' so badly, what you expect from it. What you should do next depends on your answers.

Quote:
I also want tips on self discovery

Just try to solve whatever problems, questions, and difficulties you have in your life, and be honest with yourself about your wants, motivations, and limitations as you observe them. Pay special attention to the weird little niggling things you've never understood or never been able to do (even though everyone else found them easy) or subconsciously avoided. Some of what you encounter might end up being specific to autism and some may not be, but even the stuff that is not can shed light on your questions about autism.

Read the official diagnostic criteria for ASD. Browse WP. Maybe read a couple of the memoirs of severely autistic people.



autisticelders
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29 Jul 2021, 5:20 am

welcome! You are definitely not alone.

Plenty of us have got wrong diagnoses, been given labels that don't fit, and have dealt with being called things like inept, stupid, slow, ( you get it) ... no matter what, we are still ourselves, no matter what others call us or tell us.

One person's opinion is not the "be all/say all) especially when it comes to judging others, even giving diagnosis of an official nature. I think you are already preparing yourself inside, in case you get a result that is unpleasant. That is definitely a possibility. No matter what others say, the things that make a person who they are stay the same.

We will be here to listen and give input if you care to talk more about it. Be yourself and believe in yourself. Nobody knows you like you do.


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Something Profound
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29 Jul 2021, 11:21 am

Quote:
This most likely isn’t the case. I’ve looked at childhood experiences, school experiences and present experiences and analysed various Autistic traits. Over my life span, I show many Autistic traits! Some of the traits have died down from childhood and some have appeared in adulthood.

I am really REALLY anxious about getting a “no” from professionals and I hate how I am currently feeling. I don’t want to say, “I am Autistic” and then realise I am, in fact, wrong, but I also don’t feel neurotypical/allistic or what others deem “normal” (Side note - I hate the word normal and I don’t feel like there’s any such thing as normal!).


I am sooo with you in this. I struggle almost every day with the "Am I or am I not?" and I too have anxiety over whether I will get a "no" from a diagnostician or a "yes." I have spent my entire life thus far believing I was NT with some quirks, but in retrospect I think I have just bee under the radar all along.

Realistically, it doesn't impact me too much either way, but part of me wants confirmation of something I feel is accurate (I spent two years prior from today thinking long and hard about whether I feel like my history fits an ASD diagnosis). I don't want to feel this imposter syndrome aspect of "I just think I am because I want to fit in somewhere," but at the same time I think it is valid to *want* to fit in somewhere.

And since I, like you, haven't ever really fit in anywhere (I have always been called weird or strange or...well, lots of things, several which are unpleasant. I actually am fine with the "weird" label though), this is kinda important for me.

I feel at odds with a self diagnosis. I work for a therapuetic agency (Not as a Therapist mind you), so there is obvious taboo around that for me, but ASD is one of the few things that self diagnosis is accepted (if not officially acknowledged). I tell those I trust that I think I am on the spectrum...some of them think I am wrong, some are neutral or vaguely supportive, but none have really jumped out to join me in my struggle as a support. It feels kinda lonely.

So I come here and I browse, and I think "Wow, that sounds like something I go through," or "I don't have the same experience, but I can see the connection." It brings me *some* comfort, but it isn't always easy to not have affirmation that I belong here (due to lack of diagnosis). The one thing that seems to come up a lot is a widely agreed upon consensus that people with ASD are all different, no two are going to present ASD in the same way. My life experiences, the skills I learned to "cope," and the specific position I may be on the spectrum makes my experience as a possible ASD person very different from anyone else, and may make it less obvious that I do have ASD.

All this is to say that... You are not alone in this boat. I have seen at least 3 other people (now four with yourself included) who are in similar circumstances to mine. And a lot of people feel a great deal of comfort in "knowing" that they have ASD... It explains all the odd bits of life that never seemed to sync up. It puts the puzzle pieces into place. Others find their diagnosis difficult or unwelcome, and that is justified...having an ASD diagnosis comes with certain facts and perspectives that influence how you function in society. It can, and does, create barriers.

So the point is, you have to find out what all this means for YOU. But at least there is a community here who knows at least some of what you are going through.

Hope it helps.