Diagnosis: Is it important or not?

[Leni-Ali]

Hi. I just registered to this forum, I hope I am posting in the right place.

Today is quite a difficult day, as I am struggling to find meaning and to understand myself.

I fight a lot with the fact that I don't have a clear diagnosis yet, and that my therapist doesn't seem to understand why it is so important to me to have a "label". I am a very anti-label person in other areas of my life, but I want a label in this one, so I can imagine it is confusing to them.

Currently, I have an "official" diagnosis of "Mood disorder not otherwise specified (MD-NOS)", and it bothers me A LOT.
MD-NOS "is a mood disorder that is impairing but does not fit in with any of the other officially specified diagnoses", or as I say "we don't know what is happening to you, but we need to put something on your file so insurance will cover your treatment". Or, as I also define it "the kitchen sink of diagnosis where we put all the misfits".

In the past I have been diagnosed with bipolar disorder and then borderline personality disorder (not anymore); I've been tested for ADHD (negative); I've gone through anxiety, panic attacks, OCD, psychosis, chronic insomnia; I have a great deal of trauma for sure because of my abusive childhood.

So why I am in an Autism forum?

When I was a child I started thinking I could be autistic, from what I read about autism at the time, and I finally asked my first psychiatrist if that could be possible, and he said that I don't look autistic, and that I am too "functional and well integrated" to be autistic. He is also the doctor who said I had bipolar disorder and treated me for it, so I am not sure I trust his judgment.

I am indeed very functional (whatever it means) and from the outside I have a great life, with a partner who loves me, my kids, many friends, I work and are apparently able to do anything.
But inside it is a constant struggle.

At the moment, the only thing my therapist is sure of is that I have recurring depression, and I have unhealthy ways to cope when my emotions are too strong (eating, working, self-harming, isolating).

I am pissed at the fact that they don't seem to grasp why is important to me to have a proper diagnosis, and that I am so tired of struggling after years of self-analysis, different kinds of therapy, medications, while I don't seem to get to the core of the problem.

So now I am convinced I could be on the spectrum, and that this caused part of my issues with social interactions, relationships, my constant feeling of not belonging, not fitting in, not getting how the world goes, and so on.

Sure I had a bad childhood with an emotionally and psychologically abusive family of narcissists, but this doesn't explain everything.

I tried some online tests (I know, I know) and it looks like I "could" be on the spectrum.

I am so tired and stressed by not knowing and constantly missing a piece.

My therapist thinks I shouldn't worry about "labels" and just focus on changing my harming behaviors and make healthy choices (I am doing schema therapy).

I desperately want to know WHY I am recurrently depressed and why it is always a struggle.

If you read so far thanks! I am confused so this probably came out confused as well.
Thanks for listening.

 

[tree]

 

[Fridgemagnetman]

I desperately want to know WHY I am recurrently depressed and why it is always a struggle

For me,it was (eventually!) A click.

I just said I AM.

Then I didnt to have the recognition of an authority.

I started the slow re-appraisal of every thing that ever happened to me with a new outlook.

If you read so far thanks! I am confused so this probably came out confused as well.
Thanks for listening

Doesn't seem confused to me.

Sounds like you're ready for the I AM moment.

Youre driving the bus .
Therapists whomever else can fall into line.

(If you thought 'I'm not driving a bus? 'You get double points)

 

[Tom]

There's nothing wrong with wanting to know. Because if it is autism it would help explain much. The label is something of a problem, and some wish to avoid it, but that is mostly a case of how others view us (often with negative stereotypes). But even if diagnosed that can be kept private info.

 

[Judge]

Welcome to AF. Personally I see two primary reasons for considering a formal diagnosis.

First, because one not only has considered the possibility of them being on the spectrum of autism, but because for whatever reasons, they seek government entitlements which objectively require a formal diagnosis from a medical professional.

Second and probably more common is would simply be for peace of mind for those who believe such a formal diagnosis is absolutely necessary. Debatable under various conditions, but there you have it.

The one dynamic I've always found interesting and worth reiterating is that nearly everyone who seriously pursues such a quest of their own autism eventually finds it. Not unlike someone coming to terms with being gay. That you just know it's there, but in the case of autism you just want to be sure. Though not everyone here is formally diagnosed, including myself. Yet I can understand what drives others to pursue that formal diagnosis.

I'm retired in my sixties, stumbled onto being on the spectrum in my mid-fifties and have no need of any entitlements. Apart from having researched the probability of my own autism for several years, I've continually interacted with other autistic people online where I personally have no doubt that I'm on the spectrum. In my own case I simply see no need for securing a formal diagnosis at this stage of my life.

Though many years ago I was formally diagnosed with other conditions comorbid to Autism Spectrum Disorder. (Social anxiety, clinical depression and OCD.) Just another factor to me that confirms what I already know. And that I'm ok with who- and what I am.

To me that's probably the most important thing. To accept who and what you are, whether or not one is formally diagnosed. For me it wasn't a linear process, with plenty of denial in initially exploring the possibility of my own autism.

And within the confines of this online community, to know that you are not alone.

 

[Pats]

I don't know why so many doctors think you can't be successful at anything if you are on the spectrum. I definitely understand your need for the correct diagnosis. When you get it, or even once you figure it out yourself, it's like it explains your entire world, who you are - whereas these other guessed diagnosis' didn't. Read some articles on female aspergers. I think that will help you KNOW. When you see how much you relate to things others have said, it'll be a wow moment. I ordered the book: 'I Am Aspien Woman". I marked all the things that described myself with tabs - there were a few pages left unmarked. When I took the book to my therapist, she just seen the tabs and picked up the phone to set up an appointment with a specialist for a formal diagnosis. I was 59 at the time. My married life was unsuccessful (may have been more successful had I known before) but was successful in being a single mom with no help of any kind from 'dad' and getting through school and working as a nurse to support my 4 kids. Just because I did it does not mean I'm fine - it was a struggle 24/7 and I knew something was wrong with me, just didn't know what. I keep saying that my insides and my outsides have never matched, but it's the inside that's mostly the problem and no one can see that but me.

Oh, hello and welcome. I'm glad you joined us.

 

[disconnected]

Hi, welcome to the group!

Any professional that would say “you don’t look” I would leave behind.

 

[clg114]

Hi, welcome to the group!

Any professional that would say “you don’t look” I would leave behind.

The answer to any remark like that would be "You don't look ignorant, but yet here we are".

 

[clg114]

Welcome to Autism Forums! I did not get diagnosed until I was 62. For me it was quite a nice feeling. I have always known that I was different than most people around me, I just did not know how or why. The diagnosis answered a lot of questions that I had about myself. It felt good to know why I am the way that I am. However, I do understand that we are all different and not everyone likes their diagnosis. But for me, I like being a Aspie.

 

[Nitro]

Hi Leni-Ali

 

[Isadoorian]

Welcome to the Forums! I hope you make new friends and enjoy your stay in the process!

 

[Gracey]

Hello Leni-Ali

All depends on whether or not a formal diagnosis is important to you.
(not your Psychiatrist or your therapist)

I chased mine (dx) because I want answers, closure.
it's that simple.

 

[Autistamatic]

First, because one not only has considered the possibility of them being on the spectrum of autism, but because for whatever reasons, they seek government entitlements which objectively require a formal diagnosis from a medical professional.

To that I would add the reasons of getting appropriate treatment, accommodations and legal protections in the workplace, being given accommodations during medical treatment (relating to sensory issues) and having your autism taken seriously by everyone.

Whilst we in the autistic community are on the whole quite accepting of those who are self diagnosed, the wider world isn't yet. Asking for help or explaining oneself without a diagnosis often leads nowhere and can often land you in trouble.

Formal diagnosis is not important for acceptance in the autistic community, but it can be in the outside world and for personal reasons too. Welcome to the forum

 

[Mia]

Maybe knowing is finally understanding ourselves. My husband is diagnosed, and I am self-diagnosed. I am content to know I'm autistic, it explains a great deal for me, in regards to my life and its given me a certain amount of peace.

Have worked throughout, put myself through school, have friends, the whole enchilada that were supposed to aspire to. Yet there was continually the perception that something was misplaced from very early childhood, as if I was missing a part or a clue to myself. Most everyone else I knew had less difficulty with anxiety, stress, hyperactivity, insomnia, overthinking, and many other co- morbid sensory difficulties. Often spent my weekends recovering.

Have no need for an official diagnosis, I know I'm on the spectrum. It explains a lot about and for me. Yet, if that's what you want and need, and understand about yourself, then it's best to pursue it in validation and finally have the correct answer to your struggle for understanding.

 

[Leni-Ali]

Thanks for taking the time to answer and welcome me in the forum!
I don’t know exactly how to reply to each of you, so I’ll write here.

I am in my 40s, and struggled since I was a child. What I want is answers, validation of my feelings and the right treatment.

It is true that for the external world is so much easier if you can say “I have...” or “I am...” instead of “I think I am...”
I was using this example with my therapist today:
If I had diabetes, and I said to someone I cannot have cake because of that, nobody would insist for me to have a piece of cake (or so I hope).
If I just said I don’t want cake, or I don’t think cake is good for me, for sure someone will question it.

Same for other things: I cannot be in an environment with too many people at once. I cannot socialize too much without a break. And so on.

Others just don’t get it. I need someone who GETS IT.

I feel my therapist and psychiatrist are only looking at the symptoms.
My depression and other issues are just the symptoms of something deeper. You don’t just treat the symptoms, you find the cause.

After 13 years of therapy, appointments, evaluations, medications, I am still more or less where I was when I started.
I cope a lot well, I manage my symptoms better.
But I still feel like an alien lost on a foreign planet, I still feel detached, I find hard to connect with the people I love. I dream of living alone on a little island.

Because I tend to get obsessed about things, I am afraid I somewhat convinced myself I am autistic, and I think my therapist thinks the same.

But I cannot understand the resistance from healthcare professionals in talking about diagnosis. In any other case, the first thing you want to get right is the diagnosis.

I know I need to talk about it with my therapist and get a professional evaluation, I am just scared they will refuse (I cannot get an assessment without a referral), or treat it as another symptom of my very vague mental illness.

 

[Leni-Ali]

I ordered the book: 'I Am Aspien Woman". I marked all the things that described myself with tabs - there were a few pages left unmarked. When I took the book to my therapist, she just seen the tabs and picked up the phone to set up an appointment with a specialist for a formal diagnosis.

I looked up the book and found her website and description of the traits... I think it is 95% accurate for me!

 

[Peter Morrison]

Hi Leni-Ali, Your argument for an official diagnosis is quite sound. You want it to wipe away all the unanswered questions. I am still undiagnosed, and I am working on getting an authentic diagnosis for my own piece of mind. I don't feel I need it because I am already convinced I am on the spectrum. I believe that for any medical professional who is discussing anxiety and ADD, etc, it is best of you can point to a recognizable source as the root to the issues. I've had meds in the past, but I don't like them. One type turned me into an old dog who agreed with everything and everyone. I couldn't laugh and I couldn't cry. It also gave me an appetite that couldn't be satisfied. Make me gain 15 pounds, then ask me about my reasons for depression. Everything done to me, for me, was trial and error.

If you are at all like me, you don't like having unanswered questions in your head. Unanswered questions continue to swirl in my thoughts and they don't go away until the issues are settled. An official diagnosis would put an end to all the questions. It is for that reason that a diagnosis is valuable. From what you have written, you are keenly aware of everything going on with you. That's worth gold.

 

[Autistamatic]

All I can say in the argument for and against diagnosis is to tell a personal tale.

When my employers threatened me with dismissal for "gross misconduct" after a simple autistic mistake (telling the truth) I was tasked with providing proof of my autism. Because of the antiquity of my diagnosis it took me almost 6 months to get them the proof they needed, and I was suspended from work all that time.

It was incredibly stressful and if I had realised that proving the diagnosis of 35 years ago would ever be an issue I would have made sure I had it to hand before.

 

[BrokenBoy]

It is generally, but it depends on what you're trying to accomplish.

 

[Rectify]

Welcome to the forum @Leni-Ali I like your profile pic

I finally asked my first psychiatrist if that could be possible, and he said that I don't look autistic, and that I am too "functional and well integrated" to be autistic.

Wow.
Moving on...

I am indeed very functional (whatever it means) and from the outside I have a great life, with a partner who loves me, my kids, many friends, I work and are apparently able to do anything.
But inside it is a constant struggle.

It sounds like you have a lot going for you. That's great, but the inner struggle I understand and it's tiring.

I could be on the spectrum, and that this caused part of my issues with social interactions, relationships, my constant feeling of not belonging, not fitting in, not getting how the world goes, and so on.

That is not the only possibility but yes, it is possible.

My therapist thinks I shouldn't worry about "labels" and just focus on changing my harming behaviors and make healthy choices (I am doing schema therapy).

Focusing on improving your thinking and behaviour is great (and if you're diagnosed you'll still do that) but sometimes you want to know. Especially if you ARE living with what you believe to be incorrect labels! (I think you said you were)

So, what to do? I would advise seeing an ASD specialist for diagnosis. Look for one, book in, get your ducks in a row and see what they say. An expert or specialist in autism. Preferably not one who lists it as a specialty among 20 other areas of medicine.