Do you regret being diagnosed?

[SusanLR]

I am glad to have found out even though I was in my mid-fifties before I did.
A diagnosis around age 13 would have helped me to understand myself.
Instead of thinking I was just a strange, unlikable, anxiety ridden kid, I would have known the reasons and that would have made me feel more self -confident and stronger.

My peers would have thought I was different with or without the diagnosis anyway.
But it would have helped me to have known.

 

[Suzanne]

I also had not heard of ASD ( at the time, it was Aspergers), until I read about it and particularly surprised, as it was about a young girl who was diagnosed ( horrendeously difficult for females to get a diagnosis, as only recognised in males) and I felt partly, that I could be reading about myself, but also, thought: ah, but she is much worse. Like you, I put it on the backburner too, but it was always hovering.

Now, to answer your question. No regrets at all for having a formal diagnosis. It has made me stand a lot taller ( so to speak). I can say upfront I am on the spectrum to even strangers. It has helped answer a lot of perplexing questions.

As a child, had no concept of what it was to play with others and would rather talk to teachers. As a teen and young adult, I would swing between: maybe I am not getting enough socialising and why it feels so awkward and basically exhausting, to: nope, I am having too much socialising. And this thought process occurred numerous times.

I used to push myself into difficult situations, thinking that is what I should do. Now, I can say: no, can't cope. Need to download and those in my life, accept this.

My husband was in the same room as me, when I received my diagnosis, as he is the only one, who could "vouch" or be my advocate ie what it is like living with me. And, with my clear memory of my struggles through life, even the "expert in autism" stated that he had no doubts in his mind, that I am on the spectrum, before the official diagnosis.

I received a grade 2, but actually, it hovers between 2 and 3.

So, all in all, it is very much worth persuing a formal diagnosis, since we live in a world dominiated by neurotypicals.

 

[wards]

I don't regret getting a diagnosis in the slightest, It's hard to say if being diagnosed as a child would have been better for me rather than being diagnosed at 39. The world has moved on and is more clued-up about Autism than it was 30 years ago.

There is more support and schools are better equipped generally, so I wouldn't think twice about having my daughter diagnosed.

 

[vergil96]

Hm, I'm going to offer a different perspective. I'm also glad I wasn't diagnosed younger. I'm 27 now, so it's still relatively young, but I more or less already knew what my issues were. I think it was a mistake that my sensory issues weren't treated more seriously when I was still at school and I was told I'm just making them up, and they deserved diagnoses and approach with more care such as when I got nervous and broke down crying in crowded noisy situations, and I even remember wanting to leave and being told not to. It would have spared me such much in terms of mental health and probably also its impact on my whole life in longer perspective. On the other hand, I have much more resilience and a more stable sense of self and outlook on the world now than as a teenager and it was still rough coping with feelings of self-doubt whether I'm reading pretty much everything social right. I think it could ruin my self-confidence and as others mentioned feelings of capability if I was younger. It's good to take a closer look at it, but my conclusion is still the same that I don't have any major social difficulties, and this is the impression that I have always had and that others reflected, and I don't think it's a question of masking, because I can clearly see that people who are diagnosed with autism that I know IRL clearly don't understand some things, because they lack the mental tools for it or came to an understanding not based on intuition and "just seeing it". These things are intuitive for me. However, I think that when someone is struggling, it's better to know why and address it accordingly. I didn't struggle socially, so a "global" diagnosis would be more harm than good in such a case, but if someone does struggle finding the reason why to understand it can be a life saver.

I think this is a really good approach. Whether you choose to pursue a formal diagnosis or not, I would definitely recommend using your own experience with ASD to talk to her about some of the difficulties that she may be having and help her to understand what may be going on in her brain.

Growing up with no understanding can backfire and cause major co-morbid mental health conditions. Understanding is the key, and as her parent with ASD, you are in a prime position to be a great support and teacher to her.

I agree, having support of the family and a mentor helps a lot when it comes to deling with what seems like poor attention span/ forgetfulness, socialising, mental health and other related things.

 

[Tom]

Well, she is 13,...you have a few more years of "drama" ahead of you.

Or perhaps, if you're lucky, even the rest of your life.

 

[Gerontius]

It was really a helpful thing for me. Diagnosis was how I learned to find recourse to tools that could help me quit coping, start healing, and build on it all.

I don't do government help or whatnot because of the paper work but I am happy to use the internet to find ways to get by a little more easily.

Knowing one sees things differently is a way to try to understand other people better and not hate them.

 

[Judge]

The one thing I always first and foremost consider over such a question is the immediate environment you live in, relative to how society deals with autism. Starting with whatever country you live in.

In the case of the United States, I don't see this country as a whole handling autism in a particularly friendly and helpful manner compared to other nations like the UK or Australia. That unless you are dead-set on obtaining some form of government entitlement, that getting a formal diagnosis makes it an official matter of record. Which may or may not show up later in ways that may not be appreciated or helpful.

Locally in Nevada, sometimes it seems that autism is some kind of children's disease and little else. As if we magically transcend into NT adults at the age of 18. Where the vast amount of public relations is driven by entities like Autism Speaks. An organization that IMO reflects primarily the interest of NT parents rather than their ND children.

So I retain an absolute sense of "need-to-know only" when it comes to autism in general. That even those in your closest social orbit many not understand, and even worse may not want to understand as well. In never having any intention of securing any government entitlement relative to my neurology as I have no intention of securing a formal medical diagnosis as a retired senior citizen.

I know who and what I am, and I'm ok with it. In my own case, for all intents and purposes while I am greatful that I was able to figure it out at the age of 55, I also feel a bit remorseful in being a bit too late about it. Oh sure, I've been able to make a few small advancements, but nothing that would profoundly change my life at my age (67).

 

[Storm Hess]

Yes...I sometimes do regret it. Only at my low points though. I normally bounce back and then I'm ok with it.

 

[zaphod]

I appreciate everyone giving their perspectives. It's very helpful to be reminded how everyone's situation is unique and to not be overly skewed by my own experience.

Judge, it's funny you mention jurisdiction. I am in Canada. In my last appointment, my counselor discussed how I'd likely be eligible for a disability tax credit. This was the biggest epiphany for me. Not the money part, which could be quite significant. It was the disability part. I'm still having difficulty wrapping my head around that. I have felt like I've been hanging on by a thread for years now. Accepting that I have a disability means accepting that I need support... accepting that I need a break. But I have no support. None. It's the opposite. 50/50 parenting - I need to support my kids. I can't take a break. A tax credit is nice, but not what I need. And like you mentioned, if I google anything about autism support for parents, everything is about the NT-parent ASD-kid dynamic.

You also mentioned another source of stress for me - the "need to know" thing. Given the genetics of it and my suspicions about my daughter, I feel like my ex-wife deserves to know. She did some things during our separation that scared me, and I'm not sure what she's capable of. I don't think she'd use this information against me, but I can't rule it out and that stresses me out to no end. I even asked my psychologist about it and she had said she would need to give up her files to a family court if subpoenaed (for example if she tried to use this to take away shared custody). I want to be completely honest with my psychologist but this makes me hesitant.

Seeing everyone else's responses really makes me realize that I'm in about the worst possible situation to go through this. It's not only that I started from feeling at rock bottom and have no support system. It's understanding that I have a disability, that I have unique needs, that deserve a mental health break, I deserve support, I deserve relief from this horrible constant toxic stress... but I don't have and can't do any of that because I have people that rely on me, no union to protect my job, no family or friends. It's making my anxiety worse, I feel like I'm on the verge of that thread snapping, which is why I'm starting to have regrets about going down this road. I'm sure my perspective would be completely different in a better situation.

 

[Streetwise]

I'm 46 years old and currently in the process of getting a formal assessment. I believe it's just a formality.

ASD was not on my radar at all until I watched Love on the Spectrum about 18 months ago and thought hmm... I can really relate to some of these people. I put that thought on the backburner until a few months ago and took a bunch of ASD self assessment tests and scored really high on all of them. Started doing more research and found that all my little quirks are quite common with ASD... everything from my large head to my unusual pencil grip.

Everything in my life has felt more difficult than it should have been. So many failures, so much toxic anxiety... but somehow I always persevered. I have an engineering degree from a prestigious university, had a beautiful (now ex) wife, 3 kids who I adore, a 6-figure salary, own a nice house and car with no debt.

My list of failures is equally impressive. I have no friends. I am not close with my family and hold much bitterness towards them. My ex-wife used to be my "safe person" now hates me. My engineering career was a complete disaster. University was a disaster and I just barely got my degree. Relentless criticism from teachers and family about not living up to my potential. A near constant state of toxic stress. I could go on and on.

Looking back on my life, I've had some moments of true happiness. They all seem fleeting in retrospect but nevertheless, I am very grateful for them. I can also see that those moments of happiness would never have happened without relentless perseverance despite failure after failure. If other people can do it, why can't I? I kept trying, I worked through so much pain and accomplished things I thought were impossible.

Now... knowing why everything has been so difficult for me, I feel like that fighting spirit is gone. My depression and anxiety are probably worse than they have ever been before. Maybe it's because I'm going through this with no support system at all... maybe it's because everything that seemed possible before now seems impossible.

If I had a diagnosis at an earlier age, would I have kept trying after so many failures? ASD is a pre-baked excuse for almost every failure - would I have just grabbed ahold of that and ran with it? Would my wife or any previous girlfriend have wanted to pursue a relationship with me if they knew? Would I have been ostracized and bullied (more) at school/university if everyone else knew?

Honestly I hope I'm wrong, but my general feeling is that I would have had a worse life with an earlier diagnosis. I might even be dead.

I have a daughter who is struggling. We have so much in common. Pretty sure ASD. I have serious concerns that she would be better off NOT getting assessed. Going through this is the first time I ever felt completely hopeless. I don't want her to ever feel that way.

No i completely regret ever being a member of this forum what! a disappointment but i'm nearly! gone from here so theres that!

 

[VictorR]

I appreciate everyone giving their perspectives. It's very helpful to be reminded how everyone's situation is unique and to not be overly skewed by my own experience.

Judge, it's funny you mention jurisdiction. I am in Canada. In my last appointment, my counselor discussed how I'd likely be eligible for a disability tax credit. This was the biggest epiphany for me. Not the money part, which could be quite significant. It was the disability part. I'm still having difficulty wrapping my head around that. I have felt like I've been hanging on by a thread for years now. Accepting that I have a disability means accepting that I need support... accepting that I need a break. But I have no support. None. It's the opposite. 50/50 parenting - I need to support my kids. I can't take a break. A tax credit is nice, but not what I need. And like you mentioned, if I google anything about autism support for parents, everything is about the NT-parent ASD-kid dynamic.

You also mentioned another source of stress for me - the "need to know" thing. Given the genetics of it and my suspicions about my daughter, I feel like my ex-wife deserves to know. She did some things during our separation that scared me, and I'm not sure what she's capable of. I don't think she'd use this information against me, but I can't rule it out and that stresses me out to no end. I even asked my psychologist about it and she had said she would need to give up her files to a family court if subpoenaed (for example if she tried to use this to take away shared custody). I want to be completely honest with my psychologist but this makes me hesitant.

Seeing everyone else's responses really makes me realize that I'm in about the worst possible situation to go through this. It's not only that I started from feeling at rock bottom and have no support system. It's understanding that I have a disability, that I have unique needs, that deserve a mental health break, I deserve support, I deserve relief from this horrible constant toxic stress... but I don't have and can't do any of that because I have people that rely on me, no union to protect my job, no family or friends. It's making my anxiety worse, I feel like I'm on the verge of that thread snapping, which is why I'm starting to have regrets about going down this road. I'm sure my perspective would be completely different in a better situation.

If your doctor ends up filling out DTC paperwork and you're approved, there's also a good chance, given ASD is a lifelong condition, that you could get a retroactive approval of the credit so you'll get a refund on returns for the past several years if you had income and paid taxes.

You're right in that most supports are focused on kids, and to a lesser extent, young adults. For adults, some have DTC (federal) and/or PwD (provincial) status which respectively gives a tax break and financial supports (in addition to eligibility for certain other things), but there are many who don't get any supports aside from whatever mutual support they get in communities like this, or in real life.