The Care and Feeding of your Aspie Uncategorized

Care and Feeding of your Aspie: Part 40 – Self Diagnostics; where do I go from here?

With the prevalence of Autistic Spectrum Disorders, one needs to know… Often, adults with Autistic Spectrum Disorders or Asperger’s will suspect that there is something wrong. They will feel it in their bones. They will see the bewildered looks others give them in social situations and know something is wrong. They will find themselves overwhelmed in these same situations, or by sensory input, and they will just know that something is not right… not right inside…

I have stated, quite often, that self diagnosis is not a diagnosis at all. I have taken a lot of heat for my stance on that. I have been called a bully an ass and ignorant for my stance. One response was a direct comment on my blog.

“…what you say here is just wrong. I found out about Aspergers almost be accident, researched it myself, then got a diagnosis – I certainly would not have got this if I had not done all the leg work myself! You have no right to put down people – many who have struggled all their lives with these symptoms – who have found out about this condition themselves and have the courage to face it. This is arrogant and I am afraid downright ignorant!”

I stick by the statement, but I believe, due to the nature of the response that it has provoked, that I need to explain a little bit.

It seems that my words have been interpreted as “Self diagnosis is useless.” Which has never been my intent. I believe that self diagnosis is an important and integral part of the diagnostic process. Based on the opinion of mental health professionals (and not just one, but many of them – and I have worked in the psychiatric field for quite a while), self-diagnosis is the FIRST step. The individual has used layman’s tools to confirm (in their own mind) that they have an Autistm Spectrum Disorder… but using these tools is not the same as a diagnosis.

Don’t stop… PLEASE keep going!

Often, people stop there – and that is where I start to take issue with them.

There are a few reasons for this. Self diagnostics are an important step in the process, but a diagnosis by definition can only be made by a medial professionals. According to the Science Dictionary diagnosis is:

“The identification by a medical provider of a condition, disease, or injury made by evaluating the symptoms and signs presented by a patient.”

 There are other reasons as well. Let’s talk about treatment. There are comorbid conditions, and some symptoms that can be treated with medication. To procure medication, one needs to have a diagnosis… from a MEDICAL PROFESSIONAL.

Medical Professionals train for 12 years to practice in their chosen fields. 4 years for their bachelors degree, 4 years in med school, and then 4 years in residency… This training is what makes them uniquely qualified to grant a diagnosis. The reason that a diagnosis is so very important is treatment. Treatment plans are tailored to the specific individual and are completely dependent on their… you guessed it… their diagnosis.

Diagnostic criteria often overlap… What does that mean? It means that many different conditions, diseases, and syndromes can and do have similar diagnostic traits. If you don’t believe me, go to the diagnostic tool on webMD some time and try to diagnose something… ANYTHING… it will be a range of thing… a fungal infection, a spider bite and CANCER… tuberculosis, the flue and CANCER… And that is why an official diagnosis is so very important.

Misdiagnosis can be dangerous. Bipolar can be misdiagnosed as Asperger’s. Some of the medications used to treat the anxiety issues associated with Asperger’s Syndrome can cause suicidal thoughts and tendencies, mania and hyper-manic episodes… All of which can be dangerous to the patient and those around them. It can actually cause brain damage. Further, the the cognitive behavioral training required for normalization and socialization of Autistic Spectrum Individuals needs to be tailored to the individual. If the wrong treatment program is applied (as is common in a self diagnosis or misdiagnosis), it can really screw a person up… just like with the wrong medication for the wrong condition.

These two things (12 years of formal training and the dangers of misdiagnosis) are why I insist that self diagnosis is NOT an actual diagnosis… As I have stated… and will state again… self-diagnosis is not a diagnosis at all… BUT IT IS AN IMPORTANT STEP… If you have a self diagnosis, then you NEED to seek a psychiatric professional to give you a diagnosis so that you can move forward with confidence and get the needed treatment.

To that end… I recommend the following site for self diagnosis.

Aspie Quiz

For the record… my scores:
Your Aspie score: 191 of 200
Your neurotypical (non-autistic) score: 13 of 200
You are very likely an Aspie

This is a useful tool for self diagnosis. If you take this test and it comes out positive… please… PLEASE get a diagnosis so that you can start treatment, counseling, socialization or normalization…

Isn’t that really the goal? I mean… really? Why bother with a self diagnosis if you are not working to make your life better?

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3 thoughts on “Care and Feeding of your Aspie: Part 40 – Self Diagnostics; where do I go from here?”

  1. I agree with your assessment, at least if a person is looking for medical or psychological treatment. What about otherwise? I’m very certain I have it. Fits me near perfectly. I don’t have money for professional evaluation, nor do I really want one. I don’t need help with it because I’m used to it and it’s not doing much more than making me look awkward, but I want to claim it so that I can have some closure on all the trouble it caused me earlier in life.

  2. I wholeheartedly agree with this, in principle. Unfortunately, in reality many of us are unlikely to ever get an assessment let alone a professional diagnosis. Doctors are often unwilling to make referrals.
    Many people will be left with no option but self-diagnosis or self-identification with autistic traits.

    In my own case, people around me have mentioned or suggested the possibility and I’ve scored in the ASD region in various online quizzes. (I tried the one that you posted the link to (thanks!) and got 153 ND, 39 NT so I think it’s reasonable to question whether or not I might be on the autistic spectrum).

    However, I have previously (since age 13) had a revolving door of various psychiatric diagnoses (which have frequently changed and people cannot seem to agree on and with very poor responses to medications and therapies or alternatively very bad reactions to).
    Social phobia, Avoidant/Anxious PD, Borderline PD, psychotic depression, bipolar, schizo-affective disorder, GAD, Dissociative Disorders (DP, DR, DID, DDNOS…) PTSD.
    With those things on my medical notes, I will almost certainly never be considered for an assessment for ASD.
    I think ASD makes a lot of sense given my various problems and frustrating and failed attempts to engage with MH services and to feel understood by them.

    The last psychiatrist couldn’t make sense of some of my symptoms (especially sensory issues and especially visual) and said they were more typical of neuro conditions than psychiatric illness but since my EEG and MRI were normal, they then assumed it “must be some sort of psychiatric thing” but didn’t know what.

    It has also been interesting to read about things such as “fidget toys” and “sensory rooms”, weighted blankets and wrapping up. There are a lot of things there which I have found and used as coping methods over the years simply by trial and error. And yet have found the standard “coping and distraction methods” that MH get beating me over the head with, utterly useless or impossible to do or engage with in the first place.
    I wryly recall being shouted at by a social worker who physically held my hands down because I kept fiddling with and pulling on my sleeve cuffs (I used ot pick holes in all of them) and flapping my hands when I was talking. (When I wasn’t pulling at my hair or hitting my head with my hands or against the wall/floor and pleading with them to back off and leave me alone.)

    As far as my GP is concerned I am depressive or bipolar, have anxiety and most importantly of all, labelled with PD and that’s all any doctor ever needs to know.
    Female + self-harm = BPD

    Indeed, self-diagnosis is fairly useless. It isn’t helpful in terms of accessing treatments or supports etc.

    However, it can be helpful for a person to find something they can relate to and feel that finally there are some other people who understand what they are experiencing and “get it” when the rest of the world is massively failing to understand.

    The one point I disagree on is the idea that medical professionals are, by virtue of the years spent in training, better at diagnosing mental-related conditions. In my experience different medics have diagnosed different things even though I am the same person with the same problems. It’s a bit of a lottery. When diagnoses are based primarily on someone else’s observation of the external behaviours of a person, there is a lot of room for error. The context and the internal experiences, meanings and purposes of behaviours need to be considered more.

    Sorry. I’m not good at being succinct.

    1. Here’s the thing. Medical professionals actually ARE in the best place, due to training, to make a diagnosis.

      The problem is thus – unlike any other medical condition, which can be quantified by physical tests with actual numbers – mental illness relies on language. Language is incredibly imprecise. We LITERALLY can only give a description of what we are experiencing and feeling… And that id filtered through our own experience. The listener can only do the same, listening through their own experiences.

      as is often said, people who do not have mental health issues, cannot even remotely begin to understand what we are going through. As such, they do not have the frame of reference.

      That is why there are often misdiagnoses.

      While the system is incredibly imprecise and imperfect, until things like HDFT and genetic markers are sussed out, we will not have tests that can give a definitive diagnosis 100% of the time.

      However, I take offense to those people that have never EVEN TRIED to seek an actual diagnosis and then go on to tell people “I am an autistic spectrum adult.” It minimizes us as a whole and belittles the efforts I have taken to better myself and my situation. If someone cannot be bothered to get a diagnosis, then they have no business telling people that they have a condition.

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