ASD Non Diagnosis Help

Helleh said:

it's just some understanding of who I am and i'm petrified I now may never get that due to some ridiculous reasons. 

I would give yourself plenty of time to make a decision on what to do next with this.

You already 'know' yourself in that you 'know' you have the difficulties you speak of, I do know how incredibly intolerable it can be for a person with an ASD to not know the 'why's' of pretty much anything, but how much of a difference will a 'label' really make to you? 

It seems there are just as many people who say they have regretted getting an official diagnosis as those who say it finally gave them an answer....'labels' can be extremely limiting and problematic - I also acknowledge 'liberating' for some - but as a species - or as a 'society' humans are not as yet anywhere near to accepting differences without prejudice.

I am only able to relate to another persons experience if I have experienced the exact same so to speak, other than that, my mind would be 'blank', so I do understand the 'what's wrong with me' frustrations, I have been that way my whole life right up until the diagnosis of Asperger's at the age of 49 (female sexed).

3 years 4 months and 4 days later I am still trying to 'understand' myself, I have an 'explanation' which is not the same as having an understanding and knowing yourself. ASD is an extremely complex condition with many paradoxes - the 'spikey profile' often referred to in people -  I have found it ironic that my own ASD brain thought processes can be confusing to itself in trying to understand that!

I am one of the diagnosed who had no idea they had an ASD and didn't seek out an ASD diagnosis, just that I knew I was different from those around me for as long as I can remember- if you are interested in learning more you can read my other posts. I received an NHS diagnosis. 

The label for me has brought it's own problems and often I think I would have preferred to have lived with the 'mixed anxiety and depression' label in that I have never experienced so much prejudice and discrimination as I do now from both organisations and people.

It's an instant license for the finger to be pointed at the person who has the ASD in any difficult/conflicting communications/interactions with those around them who are non ASD, even if it is clearly them who have the problem - so full circle back to "but as a species we are not as yet anywhere near to accepting differences without prejudice".

In seeking out help for my difficulties, what I was looking for was a way to 'fix' what was wrong with me, so I could accomplish things in life that I wanted to which were not that different to those around me who seemed to just know how to make happen effortlessly, a job, career, home, friends, yet when I tried to do the same it just didn't happen and if somehow I did get things going it wasn't long before it would end in disaster! 

I got my answer shortly followed by 'so this can't be fixed'...and that too is still unfolding.

I had an initial screening by my local autism diagnostic team in Jul 2019, where they told me I was anxious and wouldn't offer me an assessment. You are entitled to a 2nd opinion. My GP obtained out of county funding through my local CCG and I was referred to the Lorna Wing Centre. On 25th January this year (delayed by the pandemic) I travelled to Chigwell in Essex, had my assessment, and got my diagnosis. It does help if you have a supportive GP, as they should help you to be referred elsewhere, for the 2nd opinion which you are entitled to.

My local diagnostic team has since made many changes to their staff team, as I heard they were not doing the assessments properly, so clearly they do make mistakes, but were not willing to help me when I complained. Luckily I have a supportive GP who helped me to get referred elsewhere.

You can challenge the decision and get another assessment done. But most of the time the will stand by the initial diagnosis. When you challenged their decision ask them what they think you have instead of 'Autism' such as ADHD and PTSD which have the same behavioural profile.

the difference is how you are neurologically processing information to manifest these behaviours and not the behaviours themself which is why they may think you have PTSD or ADHD instead of Autism. 

Alternatively i wood look into the possibility of you have both Autism and either or both ADHD and PTSD as the autistic profile is affected by both comorbid disorders and have been known to camouflage or mask their behaviours as a result.

Well, among reasons against I share those with you:

• Wasn't repetitive enough in the assessment - I was trying to sit still, so they haven't picked up I have ADHD as well
• I have a small amount of friends and a partner - I had a partner for 10 year, she left me when it came out I might be autistic
• My vocabulary is good - I can speak few languages
• I'm capable of using my imagination - beyond their imagination
• and lastly because of a trauma that happened during my adult life which was a rape/attempted murder (which they were aware of prior to the assessment) - I had trauma in childhood 
• I'm aware of other people's feelings (just about) - though often can't figure them out right away
• showed understanding of responsibility - I live on my own
• ability to offer information (well it was an assessment?) - I love sharing information

There is a guy on this forum name James, he tends to give really practical advice

My uncle has always thought I was autistic, when I was a kid it wasn't really a thing so obviously was never picked up on. I made some autistic friends and they themselves picked up on traits that I had always been told were strange by my peers. 

My daughter then started showing signs so I decided to get us both assessed. My referral was within the NHS anf likewise my daughter who got diagnosed. 

I was placed with a different group of assessors which was the original referrals sister site who are experienced in trauma and are meant to be able go divide up all the information fairly to focus on the traits etc which hasn't happened. 

There were two woman the lead clinician in the first half who obsevered me do puzzles etc eith the othrt female. The lead clinician then did the last hour and a half which was pure talking. I ended up masking and talking to the point of trying to get out of there because quite frankly, she was very shut off and uncomfortable to be around. They kept pressing about my trauma from the moment I walked in. 

My medical examination after the trauma, was quite honestly less invasive. I have written a letter stating their lack of consideration to facts such as masking and their countless contradictions. If they still refuse to re visit I shall seek a second opinion 

Helleh said:

• Wasn't repetitive enough in the assessment
• I have a small amount of friends and a partner 
• My vocabulary is good 
• I'm capable of using my imagination 
• and lastly because of a trauma that happened during my adult life which was a rape/attempted murder (which they were aware of prior to the assessment)
• I'm aware of other people's feelings (just about) 
• showed understanding of responsibility
• ability to offer information (well it was an assessment?)

Oh boy, sounds like their training is out of date...yeah, I have friends, been married...social difference is the criteria, not being friendless. Good vocab; many of us have excellent vocab, even early speech development, but yet use mostly functional language or have echolalia differences in speech development, Hell yes we have imaginations albeit we use them differently, I'm aware of other people's feelings - when they tell me!, Bloody hell! Autism isn't synonymous with irresponsible behaviour, some of us are so rigidly duty bound.. yes, I offer information too. Not always understood, but I offer it. (Bless you my love, having a frustrated moment for you there).

K, you need to be reassessed. Either you are not autistic, but the above listed aren't in themselves reason to dismiss the possibility that you are. Or you are close to the spectrum ( high level of autistic traits - the needs of those who are almost but not quite meeting the criteria are in my view overlooked). Or you are a full blown Autie/Aspie, who's had a crap diagnosis.

Who did this for you? Private or NHS?

It's terrible because you end up over thinking and questioning everything you believe about yourself. 

I'm not in a position to go privately so it's very much a loss and a where do I go from here scenario. It's not the paper aspect that I want, it's just some understanding of who I am and i'm petrified I now may never get that due to some ridiculous reasons. 

They tried to blame all my daughters other issues on the fact that her father and I had split up, because that had happened a few months before I went to the GP for advice on her problems.

We we’re lucky. Our psychologist was very knowledgeable. Autism is a special interest of his, and we knew he had diagnosed females young and old.

He made use of her NHS assessment report, and challenged it in detail. The assessment process was very thorough. She was diagnosed with ADHD inattentive type, ASD and Dyspraxia. 
a far cry from ‘some anxiety from being a student in a big school’ and ‘some sensory problems’.

It's telling these assessors have never met a well adjusted Autistic individual. They may not understand why the diagnostic criteria has expanded to include mature autistics who've become better with language over time. 

While it's always good to work on our selves and become the best version of us, it can be advantageous to use these 'road blocks' as a catalyst for learning as well. When I look into classic essays by Orwell or Chesterton, column pieces for newsprint from early 1900's to the 50s, I notice that they take care to make distinctions between motives and how two seemingly similar behaviours or expressions might have entirely different motives. Many of these values still apply to relationships but aren't currently modelled in society while being irrefutably kind. The more I began to understand thesel virtues, or values, the more I could learn to behave in ways I wanted to be seen as. Now, there are always types who simply do not like my autistic innate being, but I would say most break down in communication has always been from someone assuming offence or being selfish and apologising for it several months or a year or even with one person -seven years later. 

There is a lot to being human and becoming our selves. It's definitely not easy, dx or no. It's OK to have a self-diagnosis as well especially in light of more recent events such as the DNR stamp on ones life. 

Either way, keep going! 

Thank you. I am in the UK and I was specifically refferred to the particular autism diagnosis team that I was, due to the trauma. The original assessors felt that due to their lack of expertise in those areas, that it would be an unfair diagnosis. Which unfortunately still seems to be the case. 

I do not get on well with "regular" people. All my close friendships are with those that in their own way are a little bit different (not all are on the spectrum but some are). 

I have asked the assessors to re-visit my diagnosis based on the facts I have presented to them based on why I think they are wrong. 

I'm very much at a point where all I am wanting is some clarity regarding my behaviours because my whole life i've been trying to "fix" them rather than learn to live with them in a healthy way, as suggested by yourself due to professional opinions that are clearly mistaken. 

Being a Hyperphant (over-imaginative) and having Alexithymia (inability to ID feelings), being Hyper-Sensory and also struggling Socially is a close add up for me that you are quite possibly Autistic-Wired, which is the important bit. One of the strongest markers is if you connect with other Autistics.

What country are you in? The US is well behind everywhere else in the world it seems.

One of the big issues with some of these is perspective. Here's an example. One needs pragmatics  when their brain is a bit of a mess and everything spills into each other. This is not Black and White thinking. But a need for precision. The problem is, if I ask a neurotypical for more concise detail, they hear that as needing something black and white and then project that back on me. 

While it is important to begin to separate Trauma from Autistic-Reasoning, we can become less obsessive, but may always need lists. We can have less anxiety, but will always be impacted severely. Our ability to Mature is not through things like Sublimation, but with practical books on wisdom and rules for life. While everyone may need this to some extent, we might need practical reasoning behind a behaviour to recollect it, like why it makes everyone's life a little better to acknowledge wait staff, or consciously make a gesture of always thanking others. I had to learn these through Life Manuals or by having someone spell them out. 

Get another diagnostic and in the meantime, work out your strengths and limits, and see what is trauma by what you can find resolve with. Also have a look at: 

https://aucademy.co.uk 

https://autistic-village.com 

https://neuroclastic.com 

From a FB group that discusses high range IQ tests.

Exactly that, I left feeling worse about myself than I did when I went in there. Like everything I had said had been completely invalidated and that my trauma was held against me more so but by "professionals". 

Did you find going private gave your daughter the correct diagnosis? As I am considering it. 

Good god. Why is this still happening? Females aren’t that hard to diagnose! The criteria they use is outdated and geared towards young males. Clearly you need a second opinion. 

You are quite right in your thoughts regarding the reasons they gave. I have said on here multiple times that my daughter didn’t get a diagnosis. They said things like she couldn’t have ASD as her interests were mainstream, she was attractive, she has an imagination, she had friends, she shrugged her shoulders, she nodded her head, she appeared to be embarrassed  on one occasion, she was amiable, she articulated herself, she knew when I was upset, to name but a few. Utter rubbish. She knows when I’m upset  because I go mute. Not because she can tell from my facial expression….

We tried to get a second opinion,  it were told they’d use the same criteria and come to the same conclusion, so we went private 2 years later.

I just feel like the whole thing was a farce and that they had their minds made up before I even walked in there. How did you go about getting the IQ scores? 

Helleh said:

My vocabulary is good 

That's ridiculous. I have the following scores on verbal tests created by a psychometrician. Admittedly they were done after my dx.

I just feel like they pretty much went in there with a decision made on factors prior to assessment instead of actually listening to the evidence being given to them. 

My assessment was horrid. First hour and a half was emotion/feeling/friendship related with puzzles etc and the last hour and a half was a full on interrogation (what it felt like) regarding my life story. I felt umcomfortable the whole way through and even my relative during interview declined to talk about the trauma as he could tell they were fixated on that. 

So no, it definitely wasn't a very fair assessment. 

Yes. The things you said in your OP with the exception of trauma I can relate to. Who says autistic people cannot have friends or a partner. Don't they know how much effort is involved? Also that one's friends could also be neuro divergent? 

Sometimes, and I think this happened in the assessment, i got there through power of deduction, masking, and lots of cognitive working things out. These things are internal and they don't show outwardly as behaviour.

Not being in touch with your own feelings could be to do with alexithymia which is common in autistic people. 

Anyway I'm not a specialist but I think it's important to feel like you've had a fair trial so to speak.

I did some tasks yes and they found themselves that I latched onto a spinning fidget toy out of everything else 

I do have PTSD and they were aware of such prior to the assessment. Regarding the referral process that was dome via my GP and was started because a number of my autistic friends commented on a ptobability of high functioning autism. All of my traits have existed before any trauma within my life