To be diagnosed or not diagnosed

MelonCauliflower said:

As for people being against self diagnosis, that's just capitalism trying to stop people from getting any financial benefit. They make it so difficult to prove that you deserve help that you give up.

Yes, or maybe they make business out of the diagnosis itself. Why it’s so expensive? If someone needs support and can get it only after being diagnosed, then why would someone tax them so cruel for one document that the person needs? For me honestly the diagnosis could have been helpful when I was a child. Now I don’t care anymore about it the paper because I happily sorted out things on my own but I had it really hard way. Could have been better if I had a therapy when hitting puberty and getting adult. At that time my mom didn’t wanna have me diagnosed and got upset when I asked about autism, because of the stigma. And probably also because it would be an additional problem, so it was easier to pretend that it does not exist and just keep scolding me for stimming and ticking (that’s especially my granny’s part).
Also self diagnosis for me is a way to better understand myself, improve myself and my life, but this way I’m not gonna apply for any financial support because I basically don’t need it. I’m lucky to be able to work and I happily do work. It’s been an absolute accident how I found out Autism describes me my personality and experience, just got confirmation from my doctor and that’s enough for me for the information. 

Where I live there is no support for autistic people on the NHS so that's why they don't care about diagnosis where I live, they have nothing to offer a diagnosed person so it's easier for them not to bother finding out. I find this is the same at work. It is inconvenient for them to make adjustments so they would rather just pretend autism doesn't exist. I find it really frustrating that in denying autistic people support and accommodations, they are also creating a society which is harmful for them. If everyone just agreed to be understanding and accommodating to anyone, regardless of diagnosis, the world would be such a better place. Kindness solves everything!!

As for people being against self diagnosis, that's just capitalism trying to stop people from getting any financial benefit. They make it so difficult to prove that you deserve help that you give up. The barriers to benefits then trickle down and stop people accessing help that isn't financial, but it all links back to greed.

I really like your answer! Yes, we all need to be more compassionate to ourselves and others. I also have some thoughts about many mental health professionals being against self diagnosis. Is it for practical purposes, to protect the diagnosed people from confusion or harassment or abuse of the condition (to get away with bad behavior not having anything to do with the condition)? Or maybe it’s to prove to the world that only they are the specialists allowed to assess wether someone has the condition or not, which in  ideal should be this way but the sad truth is that there are many misdiagnoses in the mental health conditions and many people struggle going undiagnosed and not being properly helped, just gaslit instead. Now we have access to knowledge and we can compare ourselves to others and the description. Only thing may be missing here is some objectivity but we can get it from some feedback. It’s a broad topic. 

It's hard to suggest if diagnosis would help you because it's so personal. I got diagnosed privately 2 years ago as an adult woman. I would say so far that it's not been worth the cost. Professionals don't really seem to give a damn. Having adjustments not implemented at work despite a diagnosis is a new level of frustration. On the other hand, I am learning stuff about myself that I wouldn't have if I didn't know I was autistic. My advice would be to experiment by treating yourself as if you have a diagnosis and see how that feels. For example, you could ask for adjustments at work without saying you need them for autism reasons, just say that you need them (all human beings are allowed to ask for adjustments, we need to normalise this!). You can also try treating yourself as if you are diagnosed autistic. Give yourself permission to be who you are without blame or judgement, because even if you aren't autistic, you still deserve to give yourself what you need and treat yourself with kindness 

My best adjustment I’ve done for myself was refusing to work in customer service. A lot of anxiety due to seeing so many different faces, you never know when someone comes or calls and what will they want from me. It was like sitting on a ticking bomb. When it comes to sensory sensitivities, they still bother me a little bit but it’s much better than in previous jobs. Now I work in a warehouse and a bit in the office, the boss decided to not put me on a forklift so problem with noise solved, lights are dim there, sometimes some smells but it’s all under control. I remember having huge problems working in the office and having to spend 8 hours in front of a screen. So these adjustments I can manage on my own without diagnosis, even if my boss decides to put me on a forklift I can also tell him that I have these sensitivities and I’m autistic and i just can’t do it. For some people the knowledge is enough, it helps me better understand myself. In my case whenever I have some doubts or imposter knocking on my door, if I listen or read someone else’s experience… I often say oh! It’s me! Yes! It’s totally me! So then it seems to be impossible that I would get a negative result when relating so much to other autists and having their advice working for me. And I really enjoy being here. 

Hi JPell

I'm a self diagnosed older autistic woman. I score 46 on the AQ50 screening test, but as my GP advised that I wouldn't get any help if I did get a professional diagnosis, I decided not to bother.

Like Alienated Human, I have learned to adapt and also had the worry about getting a negative result - because autism explains things for me, so if I was told I'm not autistic I'd be lost again. 

However it is a very personal decision, and Kate made a good point about it possibly being useful for heathcare settings. For some people it is also needed to get adjustments at work, but I got those without a formal diagnosis. I just told my bosses that I was on the spectrum and that I had sensory issues, and adjustments were arranged.

Whatever you decide, you will be welcome on here.

I find your response really helpful. I’m not seeking diagnosis exactly for this reason. I’m afraid of social services taking children away from autistic parents. In case if I get diagnosed and the German Jugendamt gets informed about it, they may start hovering over my family. I cope, I work, cook, clean etc. and spend time with my family but they still may find a reason to take our daughter away. That would be deeply traumatic for all my family. But I also have other thoughts. What if in the future (when my daughter grows up) I decide to seek a diagnosis, and it turns out I don’t get it. That would mean, that all the explanation I found and accepted as the cause of my struggles since my early childhood, is gone. That there would be no explanation and I would keep wondering what’s wrong with me then. It would bring me back to the starting point. I’m afraid of this. For me I think it’s currently better to stay self diagnosed with just the feedback from both psychiatrist and therapist that I’m almost certainly autistic. I hit high in all the tests I made. Also for me currently if I had a diagnosis it would be just a confirmation. I don’t need any financial support or substantial support in my daily tasks. There are things that I can’t do because they overwhelm me such as car driving but it’s not a problem because we have public transport and many people use it for various reasons. I found coping strategies for various situations and I’m happy that I don’t have to constantly rely on someone. Explanation and knowledge are currently enough for me to manage my life in a way that it’s less stressful and more bearable for me and it helps me accept, improve and like myself 

I think it’s impossible to predict how an adult autism diagnosis will be viewed in various situations. There’s a lot more understanding of autism now, but also a lot of ignorance still too. Personally I’m glad I got the diagnosis (recently - and I’m in my fifties). In terms of healthcare specifically I think it’s especially important as it might be helpful for those involved in any care or treatment you have to have an understanding of your needs and possibly make adjustments for you. In non healthcare settings you don’t need to disclose your diagnosis if you don’t feel comfortable to do that or have concerns for any reason. Overall I think getting a diagnosis is a good thing. 

JPell said:

I am worried about the stigma I may encounter from health professionals and really other people in general if I go for a diagnosis.

This stigma is unfortunately a real thing for many still, but it is slowly passing as the younger generation of professionals are getting educated and the older ones are being slated for their prejudces.

My advice would be to get the assessment. If you are confirmed as autistic and receive poor treatment from professionals after this for their lack of understanding then take the fight to them - make a complaint about their prejudice and lack of professional knowledge and it will force them to educate themselves for fear of any future complaints.

If you are testing borderline on the tests then you may have to accept there is a chance you do not meet the threshold to be awarded the diagnosis. The diagnosis only means you are impacted severely enough to be classified as disabled.

You are almost certainly neurodivergent based on the traits you mention so whatever the outcome it is worth educating yourself on the nature of neurodivergence and start learning approaches to dealing with ways to lessen the impact of your traits.

This site is a great place to do that - use the search button (the magnifying glass on the top right of the screen) to search for previous posts then assimilate that info and ask your own questions here.

JPell said:

I'm pretty sure the trainer thinks I'm crazy.

Most of us are to a degree - I'm proud of my own brand of crazy.