Struggling after being told I am not Autistic

You’re exactly right. It almost felt as if I was being invalidated which left me feeling lost and questioning myself. But there is no denying that I am neurodiverse; I am so confident in that. I have since seen a counsellor; I mentioned this experience in another comment and she made me feel so validated. I’m really glad and lucky that I was able to do this as it’s going to help me understand myself further and I’ll hopefully be able to help make my life that bit easier by finding effective coping mechanisms.

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

As many have and will say, diagnosis is really only useful if you need it for support or,  to know why you had certain traits and feelings that meant you struggle in some way or ways in life so you can be more aware of yourself and how to care for yourself.

There are some things that are so similar to autism and are treated differently (the meds for ADHD can mess with autistic People for example) so it's always best to have a diagnosis before any treatment that might bring risk with it. But if you don't feel you need medication then that's not an issue.

Don't take it that you've been dismissed,  it would be easy for many autistic folks to not outwardly appear to need support, most of its hidden behind masking and mechanisms we've created to cope. I've been masking that long I can sometimes struggle truly being myself when I'm on my own!

Even if it's not needed for any support reasons, It is sometimes just nice to have some confirmation of our own suspicions though, to know why we are the way we are and I guess this is what you feel you've had taken away from you??

Yes! There are a lot of undiagnosed autistic people in this world. We have the advantage of knowing who we are and having the possibility to better learn how to cope. We know that we are not alone. We have the explanation. This fact itself is a really helpful thing. Lack of diagnosis does not make you less autistic. You are who you are your whole life. I think your gp’s approach is good. 

Yeah I do think that must be the case. The only thing is, the things that I do struggle with didn’t really come up although mentioned in the pre assessment questionnaires. I’m going to follow my gp’s advice to get counselling for what I do struggle with as this may be all I need to help me cope better.

The 'work arounds' you describe are the result of your autism negatively affecting your daily life. A neurotypical person would not have any of your problems, that you are ingenious in finding ways to cope is not a negation of you having problems in the first place.

i think the issue perhaps is that a diagnosis is by doctors and they are doing diagnosis to then seek how to help you. if they realise you dont need help and your not struggling they move onto the next person, likely as they are busy and they only want to see people that seem to actually need help.

you can if you wish take it as your autistic, but yet dont require help. the diagnosis bit is mainly to get help. a treatment, a triage for a issue. if no help is needed they dont proceed. they said you have autistic traits but dont need help, so they are saying your autistic but a diagnosis is mainly for proceeding with help and you dont need that help so they are saying diagnosis isnt necessary but the fact they said you have the traits they are pretty much saying you are. so if you want you can take it in your mind as a admission and diagnosis, but not on system no help required so they didnt put you through their system.

I recently came into the knowledge that I am neurodivergent. I was told that it would be really difficult to get an official diagnosis on the NHS, but having completed a great many self-tests and research on the spectrum, I am 100% convinced that I possess high-functioning autism. It has explained a lot of things about my behaviour, both currently and in the past, and I have found the whole experience to be liberating and validating. At this point I don't feel I need the 'official diagnosis' at all. There is enough empirical evidence for me to feel confident of what I have and who I am. 

If you feel that you have autistic traits and that everything you've read about it matches and explains your behaviour, then let that be enough for you. Official diagnoses are driven by criteria that is constantly shifting. False negatives are bound to occur. 

I spoke to my gp who recommended counselling for accepting myself and to help with my struggles.

She told me that I don’t need the label and that if I have autistic traits then I do and that’s what makes me who I am. 

I think it was just hard for me to accept because I know that I do not function like a neurotypical person and I just wanted to have that validation almost to prove it to myself and others. So I’m hoping that counselling will help me to accept myself and not care what other people think of me or say about me. I’m also hoping that it will actually help me cope with the things I do struggle with.

Thank you.

I have spoken to my gp who recommended counselling for dealing with and accepting who I am. I’m hoping that it’ll help me to process it all as well as finding ways to help me with things I struggle with. 

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. 

I find myself in the points mentioned by you. But these issues still affect my life mildly. I don’t go out with anyone, avoid crowded places, shopping centres, anything that makes me feel uncomfortable. I cover my ears in the bus, I use sunglasses, I keep at least few meters distance if there is someone with strong perfume around me. Watching movies or tv is overwhelming to me, so I hardly ever watch anything, or even if - with breaks and the lowest possible brightness. I also can’t drive a car due to overwhelm and panic attacks. But there is a solution- public transport. So I don’t think I would be asessed with list of issues that don’t impact my life significantly. I even managed to find a job that minimises my anxiety. The only thing that I feel impacts me is struggle making friends and maintaining friendships. I tried but people always somehow ghost me and I don’t even know why. 

One of the prerequisites for a diagnosis of ASD/ASC is that it has to have a negative impact on your day to day life. This impact can be many things: not being able to make phone calls to make appointments, having to get off buses because someone's perfume is overwhelming, people misunderstanding you because of your facial expression or tone of voice, being unable to engage in conversations because of background noise, finding crowded places unbearable, being unable to easily switch between tasks at work, finding it difficult to initiate conversations with strangers, the list is potentially endless. I think that you may have not emphasised how and to what degree your autism impacts you. If you come across as not requiring any support or accommodation in daily life, the assessor will not diagnose you, I'm afraid. You cannot rely on an assessor asking the right questions, you have to be proactive and write these things down unambiguously on any forms and bring them up during an assessment.

Hi there,

I had a similar experience of being told I wouldn't qualify as Autistic because I "communicate" too well but have many Autistic traits.That figures having studied communication....  I was diagnosed with Sensory Processing Disorder which does fit my profile pretty well and I do personally identify with being a HSP which may be another recent term under the Autism umbrella - who knows?  I was told that there weren't adult support services in my area for SPD or Autism so I'd have to research myself on how to cope and support myself.   I don't think an Autism diagnosis would have helped me because of the lack of support in my area and because the psychiatrist who undertook the assessment was confident of my communication style.  

I was always told I was weird at school but never understood why people were saying that. I had a close knit group of friends who accepted me but I often felt alone and that no one liked me despite this.  I still struggle with this feeling that people are "pretending" to like me and am hugely rejection sensitive which I've read is a common trait among Autistics.  My daughter is Autistic and I often wonder if I am too as we get on so so well.

It's so tough being told you are not Autistic enough but not feeling part of the "norm" if there's such a thing!  I'm sure you'll find a way forward when you process what's happened whether that involves a diagnosis or not.

Sending hugs. 

Being “high functioning” and high masking gives the big risk of falling in cracks. You may be autistic (because this is the structure of the brain, you are not only periodically autistic- when you suffer the most) so this is the sad thing that you are not suffering enough to get diagnosis, you are too “normal” or at least you seem that way if you can pass as NT, but you are not “normal” enough to fit in and just live your life like everyone else. I’m not even going for diagnosis, for few reasons, but currently I know that I’m so well, I wouldn’t get one. I have a job, which I like, I have one friend and family. So yes, I’m lucky and comparing to many other autistic people who are alone I’m really well. Currently. But I used to suffer a lot. I think you can try with a private clinic. For me getting diagnosis is not a priority, because the knowledge and awareness and this site help me enough. Unlike the mental health professionals who gave me mostly negative experience such as gaslighting, wrong diagnoses, awful meds that didn’t help etc. I myself figured out what suits me best, I discover myself and it’s interesting journey, with help of this forum I found the emotional wheel which helps me a lot too. All that without official diagnosis, I just concentrate on growing, developing and finding solutions for myself regardless of psychiatrist’s opinion. Once I heard that I have many autistic traits but I’m married so I’m not really autistic. Other time I heard that it’s not a problem I don’t have any friends close to where I live (my only friend lives in other country). 

They are a private organisation paid for by the NHS. 

I suggest you appeal and seek support from advocacy groups. 

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.