How important is an actual diagnosis?

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My husband and I are both possible aspies. My oldest daughter also has that possibility, and if I am correct, she is actively seeking a diagnosis. I don't know whether hubby and/or I really need a doctor to tell us we have it, though. For hubby, I think he would say (he's not here right now, so I have to guess) that having it on paper would not make a bit of difference in his daily life. He is 48 years old and has been making a decent enough living for himself and me, and despite having been a victim of horrible child abuse, he doesn't see the need for any kind of mental health support. He says he has always known there was something different about him, in the way he expresses his emotions, but he sees no need to change it, so why a diagnosis or treatment?

For me, I have several mental health diagnoses already, and I am under the care of a psychiatrist and a therapist. One more label wouldn't mean much to me either. But if I do have Asperger's, which I strongly suspect we both do, I would want to know for sure if some kind of change would help either one of us cope, or open new doors to us.

Oldest daughter is also diagnosed with schizoaffective disorder and is already on disability. Another diagnosis would probably not change her routine either, but is there some benefit to knowing for sure, as opposed to only suspecting?

If I remember, the diagnoses for schizoaffective disorder and Asperger's are mutually exclusive by definition. You should check the DSM-IV for that one.

For me, my diagnosis as an adult just led to me being told by the psychiatric industry that they couldn't/wouldn't help me, because what I had was apparently too severe for me to spend time learning with NTs, but too mild to necessitate real help.

So, your mileage may vary.

If I remember, the diagnoses for schizoaffective disorder and Asperger's are mutually exclusive by definition. You should check the DSM-IV for that one.

For me, my diagnosis as an adult just led to me being told by the psychiatric industry that they couldn't/wouldn't help me, because what I had was apparently too severe for me to spend time learning with NTs, but too mild to necessitate real help.

So, your mileage may vary.

Diagnosis is important for me because, while I am not technically seeking a cure or anything, it does manifest itself as a disorder in me (I am severe HFA). Getting a diagnosis gets me extra money for my student loans that I don't have to pay back, school accommodation (like private exam room), etc.

To me, a diagnosis would only mean that someone who has the expertise in the field agrees with me and it's not all in my head (yes, I realize it IS actually all in my head, but let's not play semantics), so to speak. If a diagnosis wouldn't change your daily life or alleviate some mental anguish caused by indecisiveness, then don't bother; just be who you are.

How important a diagnosis is will always depend on what it would mean for you. If you feel there is some extra help that you need, which would be available if you are diagnosed, then it's worth it. If you're the sort of person that will feel better knowing for sure if you are/aren't on the spectrum then it's worth getting a diagnosis.

Taking your husband for example, if that's how he would feel about it then it's probably not important for him to get a diagnosis (my dad is a lot like that, by the time we realized he might have it he didn't see anything changing in his life if he did get diagnosed so he didn't bother.)



It sounds like knowing one way or the other is possibly more important to you. In terms of changes which might help you cope that is something you could probably look into without a diagnosis by reading up on ASDs, but you might find having your therapist help would be beneficial (or you might find it a hindrance, depending on how you prefer to work as a person.)

A diagnosis means that you can get supports in place that may help you, it also means people (like your employer) might be more understanding, ultimately it depends on where you are in life, I'm still in school so a diagnosis is a very big help to me, but your way past thi stage of your life so maybe it wouldn't change much?

If it's validation you're after, I can certainly relate to that, but a formal diagnosis is not vital in that case. If you need support, it is required.

I was granted two extra hours to finish my final exams, and the right to use a computer to type up essays. It was based on a hypothyroidism diagnosis and "possible" ADD (the neuropsych test indicated it). The teachers said they weren't sure if the application would go through based on those things. I wish I would've had something more solid. Without those arrangements, I would probably not have finished the essays in time. Now all my grades were in the top 5%.

It's also important to have a diagnosis if you can't work in certain environments. Because if you're unemployed and have trouble finding work in your field, they may require you to take any available job or you'll lose some benefits.

Finally, I know lots of people who have been stuck in the wrong place for a long time because of a misdiagnosis. Some have purely physical diseases, others have a neuropsychological disorder. Aspies (who don't have any psychiatric co-morbids) don't get the right kind of help if they're diagnosed as schizo-something.

This is something I am grappling with at the moment.

My doc thinks it’s entirely possible I’m at least ‘on the spectrum’ but do I want to go through all the hassle and stress of formal diagnoses?

On the negative side, I’m in my mid 30’s, not seeking welfare benefits of any kind and already have 3 ‘labels’, dyslexia, dyspraxia and depression, do I really want a 4th?

On the plus side, it would validate things and, at least in theory, make employers more sympathetic.

However, I am what I am, maybe I could learn to deal better with life but I can’t see any formal diagnoses changing me fundamentally.

Difficult decision and one I still haven’t made up my mind on.

I appreciate the feedback. About schizoaffective and Aspie being mutually exclusive, I'm not entirely sure my daughter's dx of schizoaffective is even accurate. The part of the country I'm from, and where she still lives, some of those doctors just don't know what the bleep they're talking about, especially the ones you go to when you don't have any money. I'll have to double check the DSM-IV for the symptoms, but she doesn't hallucinate or have delusions or anything like that.

Both of us have also been misdiagnosed in the past as bipolar.

I'm working through a therapy clubhouse to return to work. I've got enough diagnoses already to qualify for disability benefits, and I was on SSI until I got married to my husband, who makes enough money that I don't qualify financially anymore. On one hand, another label might not change things situationally, but it might change the way I treat myself, and the effectiveness of it.

Bipolar disorder has now been removed as a diagnosis of mine. The ones I do have are:
1. Major depressive disorder. (That's where the misdiagnosis came in. If I ever did go hypomanic, it was a med reaction, as it turns out, and not something my brain would do on its own.)
2. Borderline personality disorder.
3. PTSD.

My husband seeks no diagnosis since his problems don't interfere with his ability to earn a living. However, he does attend therapy with me sometimes, myself as the identified patient and he as a family member, although he benefits from the therapy as well. Our HMO doesn't do couples counseling, but gets around it that way. And he won't go into therapy for just himself. Oh well, if he's gotten this far in life without it, then it's not vital. Me, I couldn't function normally without meds and therapy. He can, so more power to him.

However, I think it would be nice for the two of us to know for sure. It would help us to understand ourselves and each other, and make a difference in how we relate, and what we expect of each other.

I took the online test that many of you have taken, and I scored "very likely." My scores were about the same as those of the poster above me. I definitely plan to mention this to my therapist and my psychiatrist. And, although hubby doesn't care about the formal label, after I told him about the test, he is curious and would like to take it as well.

Last edited by LovebirdsFlying on 22 Apr 2011, 8:45 am, edited 1 time in total.

I've been trying to write a reply to this thread all day, but I can't seem to properly explain myself.

My situation appears similar to that of Jacs (though without the dyspraxia & dyslexia labels).

The difference is that for me, I know I need to go down the path of diagnosis.

Not to get anything from anyone, but to better understand and help myself. Regardless of the end result, the process will be helpful.

I am not looking for anything else from anyone, except perhaps the doctors to stop saying "You're just depressed. Here's some pills" and giving me medication which does not work, and then blaming me for "not wanting to get better". Nothing could be further from the truth.

Mutually exclusive in most cases, but there are situations in which they can both be diagnosed.

The exception is when the autism spectrum disorder can be confirmed to have existed life-long, and the schizoaffective disorder has a definite onset and that onset is long after the ASD existed.

So I can assume that this particular young lady had ASD from birth and then had the onset of her schizoaffective disorder sometime later--late teens, early twenties, maybe. In that situation you would diagnose both.

Do you need an official diagnosis? Maybe. If you need help from anybody but yourself and your friends/family, you need a diagnosis. In the case of your daughter, the diagnosis might be particularly important because it could change how her therapists help her manage her schizoaffective disorder--not in terms of meds, really, but in terms of how she thinks and learns. If she is autistic in addition to the schizoaffective disorder, then they will have to keep that in mind when they teach her coping skills. For example, an NT in a bad situation might logically be advised to seek help from friends--but an autistic person in that same situation might just find themselves overwhelmed by having to go out and socialize, and might be better served by journaling, interacting with animals, or interacting with people in a less cognitively intensive manner like e-mail, telephone, or online. Also, schizoaffective disorder can interfere with one's ability to socialize, just like autism can, and if they are both present but the doctors only know about one, they may misinterpret her symptoms.

Have a talk with your daughter. Explain this to her. If I were giving her advice, I'd say she should go and see whether she qualifies as autistic. She already has one benefit--her parents are involved. That means that the doctor will be able to get a perspective on her childhood other than her own memories, and it makes evaluation a lot easier.

Hubby just took the test at rdos.net.

His score:

Your Aspie score: 111 of 200
Your neurotypical (non-autistic) score: 67 of 200
You are very likely an Aspie

Another "very likely." I love him. I love him. I love him.

It affects us in different ways, but we are both in the same boat. He still doesn't care to get it on paper, but it helps to know, because in my eyes, this is just one more way we're soulmates.

That's lovely Sounds like you are very happy and very lucky to have found one another.