Not autistic diagnosis

Sometimes I have some sort of distorted perception of others and I actually see them like kind of objects and stare them and observe some details on their bodies like pimples or skin wrinkles or someone who is overweight. Then I feel kind of ashamed for doing it but I know it’s only me who knows what’s going on in my head. But sometimes I fear that others hear my thoughts or wonder if I only thought that or said that. Sometimes also say my thoughts in a whisper or repeat in whisper parts of conversations I hear. It’s echolalia. It also makes me feel uncomfortable. There are so many things that make me avoid or limit contacts with others. 

The way I explain it is it feels like I’m touching someone inappropriately. 

As an adult I have learned to do it, but it makes me about as uncomfortable as if I was groping someone.

For me eye contact is problematic too. Sometimes it feels like someone is penetrating my souls, sometimes not. I don’t know why. As a child I didn’t look others in the eyes. I was told i have to do it (not explained why although I asked) then I started staring people very intense and I got a message to stop doing it. So as a result I’m confused what I actually should do. Currently I avoid or do very short eye contact with strangers and at home I usually skip it, but sometimes I also stare at my closest ones until they look me back. If I’m stressed I can’t do any eye contact at all, I dont even remember about it. 

The response of your assessor was unprofessional. The diagnostic manuals do not say 'avoid' or 'difficulties with' eye contact, but 'abnormalities in eye contact'. This obviously includes consciously timing it, as neurotypicals make eye contact without conscious volition.

This feels very much... not right. I feel bad for you.

I have my assessment next month (NHS) and I'm worried about the same thing happening. It doesn't feel right but maybe I should exaggerate my (genuine) ASD traits and be selective in what I share (e.g. just the school reports that mention me singing/talking to myself in the corner and not share the ones that said I'm a good student!).

All feels very unsatisfactory. I hope you can find peace on the subject.

Pixiefox said:

I did get adjustments at work in my last job (I'm retired now) and I didn't need to prove I was autistic. I explained that I had sensory issues and needed a different environment to save me getting stressed. An employer has a duty towards the health & safety of their employees - which includes mental health. If I was you I would explain to your employer that the assessors feel that you do not fit all the criteria to be classed as disabled, but you still have some strong autistic traits which mean that you need adjustments to prevent damage to your mental health.

A charity that works in this area offers this guidance regarding the need / absence of need for a diagnosis:

"Whilst statutory guidance states that a medical diagnosis is not strictly required when proving disability, you should note that expert medical evidence is routinely called for by tribunals when they deal with autism and other mental, behavioural and cognitive conditions.

As we have mentioned above, you can certainly ask for adjustments and you may find that your employer provides them to you without asking for further evidence. You should, however, consider getting examined and diagnosed if your employer decides to push back."

Employment Autism - Need a formal diagnosis to qualify for adjustments

THIS. My eye contact is also conscious. I learned this when I was a Hairdresser Apprentice and it was quite a hurdle, but I have it down to a T now. I did tell the assessor that but he didn't really react to that. 

I suspect that you had the misfortune to be assessed by someone whose understanding of autism is significantly out of date. 'Made eye contact' is such a red flag in this regard. I sometimes find eye contact relatively comfortable, sometimes extremely uncomfortable, and its often somewhere in the middle, with discomfort and internal 'measuring'/regulating of it with masking etc. all relative to how much I have in the tank that day, 'spoons'-wise. Your being able to look them in the eye in broadly typical ratios of to/away etc. should not have been given the unduly significant weight that I suspect it has been. I'm sorry that you've been left in this place of feeling (I suspect correctly) that they got it wrong. A private diagnosis from someone a bit more up to date may be well worth the cost, if you can manage to save up for it, and assuming that - like me - you don't feel comfortable saying (despite probably knowing deep down that you are - 'I'm autistic' without knowing you have that piece of paper that officially says so. Others here are self-diagnosed, which is an equally valid position to take so don't be afraid to be one of them. And your child's autism is hardly insignificant in all this. They could be the officially autistic result of a cocktail of you and your partner's traits all shaken together to make up a critical mass of neurodivergence that reads more overtly clearly. Or it could be that your masking is such a well-trained reflexive muscle that  you needed a better assessor. I suspect the latter is more at the heart of it. I hope you're not feeling too despondent, and wish you well. You deserve to be here, and I hope this community brings more clarity and sense of being seen than your assessment experience did. 

Oh thank you, that sounds like an option. My 5 year waiting was actually real, because covid came on in between. I guess it woudl have otherwise 'just been 3 years. Good advice from you though, thanks.

No, I live in the UK and have been here for 35 years. Hence their diagnosis of being an eccentric typical German was so weird to me.

I am so sorry to hear this and I feel quite angry on your behalf at the assessors who have left you feeling so lost and unsure.

I'm wondering if there is now some pressure on assessors to be more rigid in their assessment, to stop so many people being diagnosed - partly to disprove the idea that some people have that "everyone is a bit autistic" and partly to make sure people are unable to claim benefits. 

I feel great empathy for you, and I just wanted to let you know that you are not alone. I was so worried about the possibility of being told I wasn't autistic that I never pursued a formal diagnosis. I am who I am, I have many struggles and issues that I share with the formally diagnosed adults in this community, and I try to support others on this forum.

I did get adjustments at work in my last job (I'm retired now) and I didn't need to prove I was autistic. I explained that I had sensory issues and needed a different environment to save me getting stressed. An employer has a duty towards the health & safety of their employees - which includes mental health. If I was you I would explain to your employer that the assessors feel that you do not fit all the criteria to be classed as disabled, but you still have some strong autistic traits which mean that you need adjustments to prevent damage to your mental health.

Whether or not you go for a second opinion and whether or not you get a formal diagnosis, you are welcome here.

Are you living in Germany? 
i also sometimes do the staring thing and I was told that I have to make eye contact, then that I stare too much. So now I’m anxious about looking anyone in the eyes. Or I just make short contact once and then look away. 

I'm sorry to hear about what you've gone through, it sounds so frustrating. You do have something known as the 'Right To Choose' - I'm not certain to what extent this goes to, but I know you can use it for an autism diagnosis, and it is something I did.

Speak to your GP and mention you are after an autism test, and mention Right To Choose - this allows you to go through another healthcare provider, yet still have it paid for by the NHS. Psychiatry UK is an option, and so is Clinical Partners (I went with these). I would look them up and have a look at their websites, they both have pages about Right To Choose and how to go about the process. By doing it this way, you are going through a different testing/diagnosis process, which may result in a more accurate result - it's hard to say for certain because I've been through Clinical Partners but I have no experience to compare it with Psychiatry UK or the NHS. The waiting times are certainly shorter at the very least.

When I went through with this, it was difficult, time-consuming, and frustrating, but I got there in the end and the entire process (from first contact with GP to receiving diagnosis) was just over a year - vastly better than the rumoured 5 year waiting list via the NHS. Feel free to message/reply to me on here if you want details of how I went through the process or if you have more questions.

I think there’s a few things to unpack in there.

Firstly, you could have all the autistic traits but that wouldn’t be enough on its own. They have to be severe enough to be disabling / have major impact on your life.

I’ve seen talk of the “autistic phenotype” which refers to people who have autistic traits but don’t meet the diagnostic criteria.

My second point is that skilled assessors should be able to figure out if you’re masking and should use various tricks and questions to see if that’s what’s happening. Unfortunately I’ve heard of lots of different assessment methodologies and practitioners on here and some don’t seem very thorough.

Thirdly, there are other conditions which share a lot of the features of autism, such as ADHD and BPD. It might be worth investigating them.

Finally, you could always try a second assessment with a private practitioner, but this wouldn’t be cheap.

I am in the same position, this is why I came here. I am 58 years old and waited 5 years for a diagnosis. The outcome was that I had autistic traits but otherwise I am 'just' an eccentric typical German. At first I laughed but this is already 2 years ago and I suffer immensely. When I complained, I got no reply apart from someone saying they forwarded my complaint and I will hear back. I never did. After 2 years of waiting I told them I don't need their diagnosis, but that is rubbish. In todays society you need things in writing or lose out and suffer. 

I have all the symptoms of ASD all of them, but during the one time they saw me in person, I made eye contact [something I taught myself when I was in a job which required this- Hairstylist, it was hard to do but now my husband says I overdo this, by staring deeply too long at people. You can't win.]

They called two friends of mine in Germany who may be my best friends but they didn't nor do they knwo what I go through on a daily basis. 

The person who called them wasn't even a specialist, just a German GP who was chosen because she speaks the language. They based their diagnosis mostly on those two things. Also I couldn't immediately think of things I am obsessed with. Later on I remembered that it doesn't have to be objects, but could also be interests, so they thought I don't have any, when in fact I do. 

I'll be honest, I have slipped through the net and it makes me feel worse than before. I have so many difficulties but can't use my explanation, because without a diagnosis it carries no weight. 

I can't give up as it eats away at me because my sense of justice is so incredibly high that giving up is not an option. If I had the money I would go private, but money is lacking big time. Instead my quirks and questions when it comes to dealing with the world are treated as nothing more than being a 'weird' person. 

I had this my whole life. I have no witnesses, because Autism wasn't only not a thing back in my youth in Germany but it never crossed my mind that I had it. It is teh reason I studied Neuroscience, to find out what was wrong with me. But nothing fitted until one day I read about Autism symptoms and all of them fitted like a glove. It has been 7 years now and I have been tossed away by the NHS and have no other options. It is interesting to see that others are experiencing the same thing. 

What options do we have?

There was a thread a while back which raised the issue about there now being a subcategory of people with autistic traits, but who don't actually meet the criteria for being autistic. 

There is always the suspicion that it's more about the government wanting to save money by disqualifying  some individuals deemed as not being in need of support at work etc.

You might want to try elsewhere for a diagnosis, though I've heard that going private may be expensive. 

Sorry to hear about the outcome, that’s very frustrating. Please don’t feel you can’t use this forum. You’re absolutely welcome and this is a place for anyone who resonates with the community, diagnosed or not. 

About the work accommodations, just because you didn’t get an autism diagnosis doesn’t mean you don’t need or deserve the support. Lots of workplaces offer adjustments based on struggles employees are having, not just their diagnoses. If the accommodations are helping you work better and avoid burnout, that’s something worth pointing out to your employer. They’re supposed to support you to do your job effectively, and it’s not “taking advantage” to ask for what you need.

They would also be stepping on dodgy ground if they decide to take away any adjustments based purely on not having an autism diagnosis. You may still be considered protected under the equality act. If they chose to take away your adjustments and your mental health declines, they could be breaking the law. I am sure they will see the common sense that your adjustments are working for you and them, as it means you’re more productive. I don’t feel you have to tell them of your recent outcome anyway… but maybe if it does come up, you could say you are seeking a second opinion, which may be worth you asking your GP for if you feel that your assessment may have missed some things, or if you were highly masking during your assessment. 

I have adjustments without diagnosis. I had massive problems with facial expressions social cues etc as a child. Now as I grew up I got some life experience, after years of observations I learned some basics. So I would maybe also not meet the criteria. Maybe if at work your boss or colleagues don’t ask you for the outcome, then maybe you can just skip mentioning it and that’s it. I’m allowed to use earplugs because I have sensitive hearing - confirmed by hearing test. I ask my colleagues to give me pause for processing what I heard because I have slower auditory processing. I have these problems and I keep recognizing these I have my whole life and always thought that I’m dumb. And even if I received a message that I’m not autistic, I still have these problems and it doesn’t cancel the fact that I still need some adjustments. But I also have some strengths like for example attention to detail, I’m hard working and not gossiping. Neurodiversity is wide, there are various conditions that make people struggle in many areas of life. I wish you find here support and connections. I had same doubts if I should exist here. And I still do but I’m here. 

My take on adjustments is that if they help you do your job, and you are more productive, then the company is benefitting from this so shouldn't take it away from you, despite whether or not you have an official diagnosis. Plus, the majority of adjustments are free, cheap, or a one-off purchase - at least, from what I've heard anecdotes of.

When I had my diagnosis I was told "you do have autism, but it is mild"... and I left with the impression that if I hadn't been masking throughout my assessment calls then this answer would've been different. I think it is worth getting a second opinion.

I think that for people who mask heavily, the trick is to explore the things that your assessor might get wrong from just observation within the questionnaire you fill in yourself. I appear to make 'normal' eye contact, but I do it consciously, not in the unconscious neurotypical way (I time it). I appear to converse 'normally' most of the time, but I highlighted occasions when my close family members did not pick up on my intent because my tone of voice or facial expression did not convey my mood accurately.