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I can’t decide if I want to be formally diagnosed or not

Kitsuna

Kitsuna

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Okay, I don’t usually open up about personal details of my life on this site often, so my backstory in regards to my self-diagnosed autism is I started suspecting I was on the spectrum about 20 years ago in high school due to otherwise unexplained differences from my peers, but I was shut down at the time my my mother she thought I didn’t have it. She’s actually in Special Education, so thought the issue was put to rest (I don’t want to go down the rabbit hole of whether she should have caught it/got me diagnosed, etc because this is water under the bridge). Flash forward about 10 years, my dad sits me down and gently explains he’s read up on autism -which he didn’t understand much when I was a kid in the 90s and 00s - and strongly thinks I has Asperger’s. For the most part since then, I’ve never made a huge effort to get a diagnosis since then for various reasons, including basically being told by one mental health professional treating the symptoms is more practical than focusing on trying to get the label. This changed until about 2 months ago until I told another counselor all of the above and she told me she didn’t agree with the past counselor and encouraged me to get a diagnosis (that she isn’t trained/qualified to make) for the sake of better understanding since she thought it was possible I had autism too. I decided to initially take the leap and seek a diagnosis from the neuropsychologist who handles my medications. Turns out she can’t do anything than administer a questionnaire that looks really similar to online autism tests I’ve done before, but if it comes back suggesting autism, I can use that to move forward.

Here’s a couple catches though: a month before this neuropsych appointment I very nearly posted on here that I was getting a bit scared of a formal diagnosis due to possible regret. Also, when I was taking to my doctor, she asked me if I really wanted the diagnosis and I hesitated before saying yes, I thought it was good for me to finally know for sure. I’ve also completely procrastinated on filling out the tests and getting it back to her.

On some level, I do kind of want to know for sure because all I have technically is hunches from me and others and if I suddenly abandon what I started, I’m scared this is just being flaky and weak. On the other hand, I think why I never tried that hard until recently to do anything is I’ve been content with suspecting I have it and seeking unofficial help about it. The neuropsych also told me something in line with the first counselor: even with the diagnosis, I’m not going to really access any autism-specific therapy- someone would just advise me about my problems regardless of what was causing them (not verbatim- that was the gist of what I remember).

Can I get perspectives on this please? Thanks !
 
Well... this is not easy to answer, I was kind of seeing it as a "fun" fact when I started my journey - I thought it wouldn't change anything important in my life

.Then as I slowly learnt more and more about what it meant to be autistic it suddenly flipped, I had to know!

Getting the diagnosis has changed my life, not the paper, but what followed in self-realization and in the help I got, it could be targeted my specific profile, like workplace accommodations and when I went to ask for help and got my social worker assigned, she could read it and knew which help I needed - But then I have been extremely lucky and gotten a lot of support, some people get the diagnosis and are then left on their own.

But then I was also spiraling down and falling apart as undiagnosed - so something had to happen. I wish I had known earlier, maybe many unhappiness could have been avoided - so I would probably recommend to get it, based on my experience :)
 
Kitsuna said:
Okay, I don’t usually open up about personal details of my life on this site often, so my backstory in regards to my self-diagnosed autism is I started suspecting I was on the spectrum about 20 years ago in high school due to otherwise unexplained differences from my peers, but I was shut down at the time my my mother she thought I didn’t have it. She’s actually in Special Education, so thought the issue was put to rest (I don’t want to go down the rabbit hole of whether she should have caught it/got me diagnosed, etc because this is water under the bridge). Flash forward about 10 years, my dad sits me down and gently explains he’s read up on autism -which he didn’t understand much when I was a kid in the 90s and 00s - and strongly thinks I has Asperger’s. For the most part since then, I’ve never made a huge effort to get a diagnosis since then for various reasons, including basically being told by one mental health professional treating the symptoms is more practical than focusing on trying to get the label. This changed until about 2 months ago until I told another counselor all of the above and she told me she didn’t agree with the past counselor and encouraged me to get a diagnosis (that she isn’t trained/qualified to make) for the sake of better understanding since she thought it was possible I had autism too. I decided to initially take the leap and seek a diagnosis from the neuropsychologist who handles my medications. Turns out she can’t do anything than administer a questionnaire that looks really similar to online autism tests I’ve done before, but if it comes back suggesting autism, I can use that to move forward.

Here’s a couple catches though: a month before this neuropsych appointment I very nearly posted on here that I was getting a bit scared of a formal diagnosis due to possible regret. Also, when I was taking to my doctor, she asked me if I really wanted the diagnosis and I hesitated before saying yes, I thought it was good for me to finally know for sure. I’ve also completely procrastinated on filling out the tests and getting it back to her.

On some level, I do kind of want to know for sure because all I have technically is hunches from me and others and if I suddenly abandon what I started, I’m scared this is just being flaky and weak. On the other hand, I think why I never tried that hard until recently to do anything is I’ve been content with suspecting I have it and seeking unofficial help about it. The neuropsych also told me something in line with the first counselor: even with the diagnosis, I’m not going to really access any autism-specific therapy- someone would just advise me about my problems regardless of what was causing them (not verbatim- that was the gist of what I remember).

Can I get perspectives on this please? Thanks !
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For the vast majority of us that are of the ASD-1/Asperger's variants, nothing really changes because we generally don't qualify for any assistance. However,...if you need employment accommodations or are in contact with law enforcement or judicial system, having that diagnosis does put you under the limited protections and considerations of the disabilities acts for your country. In the US, the ADA.

Having said that, autism is a prenatal, genetic/epigenetic, neurodevelopmental condition that affects the brain anatomy, physiology, neurotransmitters, conductivity, conductivity,...and also affects the GI system, the neuro-motor system, and the immune system. In short, it's a medical condition that has secondary psychological and psychiatric symptoms. There's a lot more to it than being "neurodiverse", a lot more.

Having said that, because autism effects multiple organ systems, often in the form of dopamine turnover, serotonin levels, oxytocin and vasopressin levels, oxidative stress, homocysteine levels, methylation, fine motor skills, cytokine release, etc, it can give other causal/partially causal explanations/contributing factors for common medical signs/symptoms like elevated blood pressure, endocrine hormonal imbalances, a more pronounced inflammatory response to tissue damage (exercise or injury), as well as, viral illnesses and cardiovascular disease. So, from a medical health perspective, this is handy information for you and your doctor to know why or why not you are responding to certain medical treatments and/or have "unexplained" physical symptoms.

If you are "self-diagnosed", whether or not you actually do have an autism variant, this puts you at a disadvantage when it comes to these conversations and interactions. I can also appreciate all the reasons for not receiving an "official diagnosis", usually time, money, convenience, psychological, and in some cases, "it doesn't matter" to the individual,...this topic has been discussed several times on the forums. To each, their own.
 
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I thought I would never have the chance and then, suddenly it came my way and the process was as you describe, with the online test etc, but mine was with a particular purpose in mind. I saw the Neuropsychologist twice and the second time, she said that I had a typical aspie score and sent my details to the "expert in autism", who saw me, much faster than the usual time span and diagnosied me level 2 ASD.

I would say go for it, because it at least stops the yoyo aspect. It will come be both a relief and kind of pride that you were right, followed by panic that there is no back door! But, I find it has helped as well as not helped.

I am treated more of a pain, then with respect, from those around me. I sense they tolerate me, rather than want to get to know me better, despite all my efforts to try and "fit in".

Your father sounds really mature about all this and I love that he corrected his own ignorance on his lacking knowledge. your mother is suffering from her pride being dashed. How can she be in special education and yet, miss her own off spring, so to keep her pride in tack, she is denying your self worth. Sadly, most mothers are like this.

But, I am glad I went through it all, because if I am accepted for disabledment, it will be of great help for me. And, happily, my condition is top on the leaderboard for what is considered disabled.
 
Hello @Kitsuna

There are many angles to your question, and I would start with one question: What do you expect to get from the diagnose?

Money/Help from the state: People who want to get help from their country must be diagnosed, so have little to lose by getting diagnosed other than the money spent.

Better understanding: A good profesional doing a diferential diagnose may be a very good help to understand yourself better. Autism rarely is there alone, or even exist alone. Trauma usually is there too, since being bullied/socially isolated produces that. And other co-conditions/co-morbilities may be there too, so a good diagnose is usefull. A bad diagnose is not that usefull, many bad profesionals will just give you the same tests you did and little more. There are many frustrated people that go from one profesional to another burning themselves. So doing a good search and choose a profesional who is validated by adult autists is advised.

Aceptation from family/friends/coworkers: This tends to be way too optimistic. It may work and it may backfire. Family can just ignore/reject the diagnose. They can also accept that you are autist without understanding or learning what is that. They can blame you, or even use your diagnose against you. The work enviroment may give you some accomodations, but you can be hidenly blocked a better position because you are "imparied". Diagnose can also be used to bully you. This depends a lot on the company culture. Masking your autism may work better, so its difficult to know in advance.

To give you an example, when I discovered I have autistic traits I told some "trusted" people of my family. I was expecting them to see those "peculiarities" from some family members and conclude (like I did) that autism traits are strong in our family and paying special attention to our kids was a good idea. I was instead explained by them (who had no idea of what autism is, neither had they read a book about the topic) that I could not be "that". So the next months I was sent "autism" internet articles whose tittle (because they did not even read them) suported their view about how it is impossible that I am autist. Things like "you are creative" and autists arent, you have "empathy" and autists dont... In a one-way conversation where I was being just the "listener"... Some time have passed and the topic is still a tabu. Meanwhile, some of my nephews are showing rigidity, sensibility, strange alergic reactions, "bad behavour", being slow in lenguage adquisition, too literal... Some others are aproaching to adolescence, where I faced strong problems myself... and nobody cares if they may have autist traits...

As I have read posts here, it seems quite normal to get this kind of family bad reactions... Im glad that your dad supports you in this.

Best of luck.
 
Just a personal perspective that may or may not help ...

As others have mentioned, a formal diagnosis (depending on your circumstances) may act as a gateway to more appropriate support / workplace accommodations - even if not now, then later in your working life.

If you are at all worried about other peoples' reactions, then it's worth remembering that a formal diagnosis is strictly personal and confidential. You'd be under no obligation to disclose or talk about it with people you don't feel comfortable with.

I think a powerful reason for a diagnosis would be validation or key life experiences. I've spent a good deal of mental energy in the past few months saying to myself "oh, no wonder that happened in that way ...".

There's no right or wrong way to approach this.
 
Great comments. What was your goal, do you feel you need a validation of a label to be accommodated in school, employment, financial support? These are all compelling reasons. Do you need the emotional context of that explains everything? Are you prepared for some backlash? Sometimes we don't want our employer to know this, or our neighbors or medical professionals. So it depends on your personality and what long-term goals you are going for in life. But it's a great question, pretty much you will need to come to terms on how you wish to proceed. My daughter who is definitely on the spectrum, did struggle. I decided to homeschool her, which was sort of on her terms. By young adult age, she struggled but came out of the adolescent wormhole. She is taking a coding class, and is a data analyst. Would it have helped her to be dx as being on the spectrum? She doesn't seem to like that word. I threw it around in conversation, and it didn't go over well.
 
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A useful aspect of getting a diagnosis by somebody who is qualified and has experience seeing autistic adults is that you can work on the issues that are a problem for you. For many it is also a big relief in the sense that problems with interactions with others lead to a lot of blame and a sense of failure. If it doesn't have a neurological explanation, then it must be character flaw that lead to failed relationships and isolation (and so on).

The label itself is irrelevant unless, like others have mentioned, you need formal accommodations, which require proof of a diagnosis.

The other aspect not discussed often is that you can apply the autistic label to yourself and move on. Yet, if it happens to be wrong, you could be wasting your time attributing autism to issues that could be addressed some other way, including medications.

I feel that false positives are not mentioned often enough when it comes to autism. A wrong diagnosis has negative consequences.
 
Thanks for the responses so far everyone!

With what I want out of this: I think it’s mostly a combo of better self-understanding and a bit of validation. I agree the diagnosis (I think I picked up the “label” wording from somewhere and just rolled with it, but maybe that’s a clumsy way of talking about it?) by itself is pointless, so I’ve been approaching the process as a way to know the context of the things I struggle with to get better help. I’ve been trying to figure out why I’ve gotten cold feet after multiple attempts at a diagnosis and walking around considering myself likely autistic, and I think before this, I knew I could only take internet info with a grain of salt so I guess I didn’t really take everything that seriously? Now that things have gained traction and I’m looking at a possible permanent scenario of having a diagnosis on my records, a fear of the unknown kicked in.

I know a diagnosis opens the door to accommodations, but I don’t think I want to use those that much. I live in the US and I’m not in need of SSI (not now anyway- for all I know, I might need to take advantage of disability support in the future). I’d rather not tell an employer I’m on the spectrum if it can be helped.

I think the thing that specifically started stopping me in my tracks is personally viewing a diagnosis officially setting me apart and suddenly wanting to pick the situation that I saw as blending in more. But I’ve thought about this and I wouldn’t reveal a diagnosis to anyone who might possibly start viewing me badly anyway, so it’s not a reason to have an issue with getting diagnosed anymore.
 
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