The "what if" kicked in

Thank you for your warm words. This community is my home.

Lotus said:

you will still be very welcome here. You are a valued member of the forum.

Totally agree. I love your paintings and model scenarios. I was 'briefly' diagnosed by a counsellor, then a consultant Psychiatrist, age 54. It wasn't what many call,'proper' diagnosis [whatever that means] but the fact is, I FEEL comfortable and at home in this community. If you like, I adopted it! So, don't be over-concerned about diagnosis in the matter of belonging here - it's where you feel at home, safe, happy and fulfilled that's more important.

That’s tough, especially when you know your mum could provide some medical history that could facilitate diagnosis. As you say, your mum would likely be unreliable, so you have no alternative but to use whatever medical history is available to you, and your account of growing up and experience of day to day life. I don’t know how assessments are conducted in Germany. Here, ideally someone could give an account of childhood, but most clinics recognise that can’t happen in every case, especially in older adults, and diagnosis should never be refused on account of that.

It sounds like you have gathered a sizeable amount of your relevant history for the assessment. I hope you get the answers you are looking for and that it will bring healing.

Thank you, yes it would be easier to have one simple test to confirm a diagnosis. My issue with the records of the past is that my mom made sure that any record stating any problems was deleted - thrown out. Even when a doctor wrote me, that I was hyperactive (restless legs, rocking stimming hands) she was upset and asked the doctor to remove it. But it stays and I have it. Nobody had a right to mention my problems. So I collected as much as I could from other family members, school and the medical records that were not thrown out. I also have photo of myself stimming (I was 12) in a way that actually does harm to me. I still do it and because of pulling my skin I got wounds many times and now I have black spots on my lips. This is a reason, once my dermatologist suggested a psychotherapy. I have quite much evidence of my old special intrests.

You are a human who has as much right to be here as anyone else, so please don’t think otherwise, no matter what your diagnosis may be.

I hope what I’m saying doesn’t come across too authoritarian. Some of the following is based on my inner dialogue before and after assessment, when minority and negative political opinions on ASD had been high profile news.

It’s natural to be anxious about your upcoming assessment but you’ve done everything you can to collect as much proof of your behaviours, differences and interests. It would be surprising if everyone who went through the assessment remembered to mention every relevant detail of their lives. The nature of ASD and its diagnosis means accurate recording of lifetime past behaviours and events would be impossible to relay with precision. Many people come away thinking they should have mentioned ‘such and such’ etc. but it doesn’t necessarily make a difference to the diagnostic outcome.

If you are diagnosed, prepare yourself for imposter syndrome afterwards, and don’t pay attention to Uta Frith whose latest views are not widely accepted by autism experts. It would be reasonable and rational to accept the most widely accepted expert research on ASD, so don’t be overattentive to minority views because that would not be commonsensical. 

In the absence of a ‘magic brain and body diagnostic ASD scanner’, it would be reasonable to accept the diagnosis given by your assessor.

By the way, I love your paintings and character scenes. You choose such beautiful colours.

Ok, sorry I misunderstood,  now I get what you mean by borderline case.

I'm absolutely sure that I do have some condition that affects my whole life, so if it's not autism, then I want to know, what and I'm gonna ask the diagnostician. 

Ah! I think I may have explained myself incorrectly. “Borderline” is probably not the best term for me to use, since that could be easily misinterpreted as referencing BPD. I was meaning to say that I was diagnosed as being between Autistic and not Autistic. I was on the border of that.

So my advice is that if the assessor states that you are just barely qualifying for being Autistic, you could suggest that they lean more towards not giving you the diagnosis in that case.

You are absolutely correct though, BPD and Autism can be comorbid. You are also correct that it seems like there is a weird tendency for diagnosticians to diagnose one or the other (I find that especially interesting that it seems to be a trend with women in particular…)

You can have both- autism and borderline,  I don't know why the diagnosticians rule out one since they find the other. They can and often do coexist and ND people are even more likely to develop various comorbid conditions than NTs. Of course I don't know if you have BPD or was that diagnostician wrong.

There are various views, some emphasise more tge struggles, others- the super powers, some say that autism is a disability,  others say its just a difference. The fact is that it's a diagnosis- diagnosis is being given to someone having a condition that affects their health/functioning/wellbeing. It shouldnt be given to everyone,  then it would lose its point. The struggles snd the super power often co exist. People just prefer to view it from different angles.

Alien0n3arth said:

If I'm not autistic,  then I don't want this diagnosis. I'm done being misdiagnosed and falsely treated in the past.

That’s totally fair and reasonable. How about this: What if you make it clear to your assessor how you feel? You could even say that if they find that you’re borderline, to lean more towards declining it. That’s not what I would do personally, but maybe that would make you feel even more assured about it if/when you get a positive diagnosis?

I’m not certain that’s the best advice, but I think it’s at least worth a thought.

By saying "some traits" I mean some traits that are insignificant (don't cause struggle). I'm absolutely not saying, that someone deserves or does not deserve the diagnosis,  I'm not a diagnostician. But as stated above "everyone can get the diagnosis"... it triggered me somehow. Because unfortunately I'm not like everyone and it caused me a lot of trouble in my life. 

There are also people who show some of the autistic traits even quite strong, but still are not on the spectrum (primary characteristic of ASD is social communication differences and repetitions). I had a colleague at work, who had to plan everything in advance to minutes, everything perfectly planned and scheduled. But she communicated absolutely normal. I'm not a diagnostician, but this person is probably not autistic. 

If I'm not autistic,  then I don't want this diagnosis. I'm done being misdiagnosed and falsely treated in the past.

Exactly! The psychologist that diagnosed me even stated that I am so borderline that she almost considered not giving me the diagnosis. What pushed her over the line was my personal testimonies about sensitivities and difficulty with social norms growing up. Does that mean I don’t deserve the diagnosis as much as someone with more definitive traits? I hope not.

If there is an explosion of Autism diagnoses being “handed out,” then it’s likely because there is - and probably always has been - a lot of Autists out there.

Alexa said:

I told him to wear a baseball cap

Whoa… is that why I wear a baseball cap all the time?!

Lotus said:

She has some sensory sensitivities which cause her distress in the office where she works, which her employer will not do anything about.

It's a shame. I did my best for one of my staff who hated bright lights but was not autisitic. I told him to wear a baseball cap or eye shade to work while I fought to have dimmers put in at his end of the office. Managers can do it, but you're right that having a diagnosis increases the chances of getting some help.

Alien0n3arth said:

If everyone can get the diagnosis just because of having some traits then it's bad. Then Uta Frith is right.

I don't know if that happens and I can't see how anyone can know. A scientific experiment would require one patient to present the same symptoms to a range of different diagnosticians (say at least 30) and record the results. Without scientific evidence, it's anecdotes and opinions - which almost inevitably reflect the prejudices or hopes of the person giving the opinion.

Medics are people and also have prejudices. Ideally, a scientific experiment would eliminate those but that's not possible. So, in a scientific experiment you try to get over that by increasing the number of dianosticians to (say) 100, in the hopes of reducing the effect of those dratted prejudices and other variables.

Alien0n3arth said:

If everyone can get the diagnosis just because of having some traits then it's bad

I'm sorry, but I politely disagree. For example, my friend scores as borderline on the AQ test and has some autistic traits. She has some sensory sensitivities which cause her distress in the office where she works, which her employer will not do anything about. If she had an autism diagnosis she could claim that she needed adjustments due to a disability - this would make her life better and wouldn't hurt anyone else.

In the UK most autistic adults get no support after diagnosis, but most employers should be able to make adjustments to help autistic employees. Actually, I feel that all employers should try to adapt to the needs of their employees, autistic or not, but in most cases you need a formal diagnosis for this to happen, just as you do to get the letter saying you don't need to drive as part of your job. So I cannot see anything "bad" about being diagnosed because of having some traits.

If everyone can get the diagnosis just because of having some traits then it's bad. Then Uta Frith is right.

would it really matter if you did or you didnt a diagnosis is just a piece of paper , if they said you weren't but you had so much lived experience to say you felt compley different would you actually care about their take,

at the end of the day is a condition that you live with in every moment of your life in all the worst ways, its not a Buch of check boxes you pick so you can show off to everyone for attention, you know if you do or you dont have it, the diagnosis is just confirming somthing you already knew or you wouldnt have gone for the diagnosis in the first place.

and tbh if your worried they do give these out to everyone now , so if you do want it if you have any symptoms you will receive it tbh so you will be fine.

Thank you all for your support, I do my best to stay sane in this stressful period. 

It's 'sane' for me, some people would call it insanity but most probably not in this forum. I don't have any new story as for now.

Thanks Prof, I appreciate that. I could be entirely wrong about thinking that I'm autistic, but this community is the only place where I can feel truly understood, and discuss stuff with people I have a lot in common with. That's the real benefit of this forum.

And hey, even though I already knew Lotus doesn’t have a diagnosis, I still respect her opinion on this site. Heck, she could be wrong about having Autism and I’d STILL respect her opinion, since she obviously knows enough about the subject to be a big help for others. (Sorry Lotus, I do believe you’re Autistic, lol)

So same for you, AlienOn3arth. Your opinions, concerns, and advice are thoroughly welcome here no matter what happens with the assessment.