Published on 12, July, 2020
Hi, I’m going to try and keep this short.
I recently had an assessment with Psychiatry UK where I was basically told I don’t struggle enough to have a diagnosis even though I do have autistic traits.
I have felt different my whole life and just cannot accept this as an answer. I am a woman in my early 20’s and I am aware of the fact that often women go undiagnosed because of outdated concepts as well as masking.
Has anyone else been in my situation before? And if so, how did you eventually get your diagnosis?
Thank you in advance, I’m feeling lost.
NAS94802 said:I have felt different my whole life and just cannot accept this as an answer
It helps to bare in mind that the label of autism given out by these assessments is about whether you are affected by your neurodiverse traits enough to meet the threshold of being disabled.
Neurodiversity is a spectrum which means you have a number of different traits, each at a level of impact on your life. If you have enough at a high enough level then you qualify as disabled.
You are quite probably still neurodivers but not badly enough effected to meet the threshold value that has been somewhat arbitarily chosen.
In essence, you are autistic but not enough to need help.
You are still capable of suffering from your traits so I would advise to consider yourself as autistic and look up the traits you exhibit and learn how to manage them and improve your quality of life.
Look at the posts here, contribute, ask questions and learn - that is what this site is for, and also for some social chit chat sometimes
We will still consider you as one of us if that means anything.
Hi, thank you for your advice, I really appreciate it! I just feel as though what I do struggle with wasn’t really mentioned or spoken about. I know it might sound silly, but the reason why I went for a diagnosis was for validation of my feelings and experiences I have had and do have. I just wanted there to be an explanation for how I am.
I have since been so to see a counsellor who has experience with autism and adhd and she was shocked that I haven’t had a diagnosis. She said she could tell within the first 15 minutes of speaking to me that I am neurodiverse because of the way I speak about things and the lack of eye contact etc. She’s going to work with me to gather evidence as she believes I could have both Autism and ADHD and then this will help me to go further if I decide to get a second opinion. She also said that she believes that I mask that much that I mask to myself which is why I may have struggled with giving the answers the assessor may have needed. Seeing the counsellor was really validating for me even after the one session as she was able to understand how I work and she even noticed things that I do that I never realised before.
NAS94802 said:I just feel as though what I do struggle with wasn’t really mentioned or spoken about. I know it might sound silly, but the reason why I went for a diagnosis was for validation of my feelings and experiences I have had and do have. I just wanted there to be an explanation for how I am.
I would write it down. Organise it and bullet point it. So that it is clear. This will help you to get it all out of your head, while it is clear, and so that it isn't going round and round.
Also, you could continue coming to this forum. You aren't the only person without a formal diagnosis.
Anything that resonates, you could add to your bullet points. At some point, when you feel ready, you could go for a second opinion. Your first assessment wasn't a full assessment. Take your time. Your GP sounds good, how about ask her to put you on the waiting list to be seen...that will give you at least 2 years!
A really good podcast for women is 'The Neurodivergent Woman' podcast. The first couple of episodes go over autism and diagnosis really well.
Personally, the test sounds substandard. I would have wanted the ADOS test, and to see people in person. I would say don't look up what the tests are about, or you could end up second guessing, and that can create anxiety.
The fact you have kept repeating the same things, throughout your post, suggests an inner knowing that 'something is afoot'
We tend to know if we are or not...definitely worth looking into some more, and getting a second, full, assessment.
x
I absolutely agree. We fit here so this is place for us. Autism is a life long condition meaning it should be diagnosable during the whole life. I also manage by myself, therapists disappointed me so far but I keep looking. This site also helps me a lot. I know I would have been diagnosed when I was a kid if my mom has agreed to have me tested. Even now when I told her I’m autistic, she said “no, you can’t be autistic because autistic people do repetitive movements” - I do them. - yes, but it’s not like that. And then I hear “stop rocking, stop bouncing your leg, picking your lip” etc. other time I hear that I can’t be autistic because 10 years ago I went to a company party that had a lot of activities outdoors and that was the only reason I we t there. Otherwise I hear “stop sitting alone go party meet some people” and lady but not least “autistic people have no friends or only one friend” I have one long term friend. Then I hear “yeah but it doesn’t make you autistic”. They can point out all my traits like understanding things literally or catching slower than others, other things that are classic autistic traits but if I suggest that I’m autistic then I hear no. The knowledge and awareness are empowering, so I don’t care what they say anymore
NAS94802 said:I just wanted there to be an explanation for how I am.
You have autistic traits which almost certainly means you are on the autism spectrum so it helps to understand about autism as a whole and then dig into information about the traits you experience. I would recommend the following for this:
Understanding Autism For Dummies - Stephen Shore, Linda G. Rastelli, Temple Grandin (2006)ISBN 0764525476
A super simple summary is that your brain developed a different way to the majority of people (about 15% of the population is neurodivergent, of which 2% are autistic, so there are a lot of us) through a process that is still being understood so all they say at the moment is that it is probably genetic with a few other factors.
The brain development meant that a lot of the information filters that are wide open in very young children do not start to switch off or consolidate which is the case for neurotypicals - instead we have lots of information flooding into us and it is why so many of us are super sensitive to light, sound, smell, touch etc.
Everyone seems to get a random selection of traits and intensities for some reason (still being researched) but this means we are all a bit different to one another, making it hard to lump us together and point at someone to say "they're autistic".
So in summary - we don't know enough yet but you are who/what you are and the best thing is to accept it and deal with what you can identify which are your traits.
If you stuggle with these then a therapist skilled in autism would be my recommendation for helping you come to grips with it and accept yourself.
That is the whistlestop summary if it helps.
Hey there
Thanks for posting, I have not started the process of seeking an assessment yet but I plan to. Like you said I need validation for myself and to understand why I have struggled being so different all my life so far. This obviously isn’t picked up on easily as I mask a lot, it’s how I’ve survived so far but awareness has made me question why should I mask. I am terrified of being told that I am not autistic as internally I struggle most days with something, I am not after support from the NHS and feel like I can just about manage things myself by being on here, having my therapist and being by myself as much as I can. This is difficult as I’m married (just about) with 2 children one of which is autistic. I think anyone who is self diagnosed is completely valid, just to be taking part on here tells me that you have found a place where you fit. That’s happened for a reason. I totally understand why you feel disappointed as I would and probably will too in the future.
As the others have said it doesn’t mean that you are not it just means that you didn’t match their criteria. You know yourself well enough to identify so accept your own judgment.
I do wish you well in the future and stick around here.