Entry 31: Missed Diagnosis - More Than Just A Misdiagnosis

March. 29. 2013

Misdiagnosis causing a "Missed Diagnosis": When one who is truly on the autism spectrum gets seen as something they are not; at least at the core. It happens all the time. It can do much harm, and not much good. What happens when underlying behaviours are mistaken in their causes and motives? More trouble is what.

Autistics often develop some degree and/or type of mental health comorbidity due to trauma; caused easily when the autistic person is not recognized. A good example would be with AS females and both the "borderline" and "bipolar" labels. With what many AS women are put through, they're prone to develop these kinds of affects. However, without knowing about their AS it's pretty difficult to make a recovery  I have a lot more to say about that particular subject, later.

Aside from my own experience, I hear similar stories over and over again. Stories of when a medication is given and causes the person to become much worse in their symptoms, stories of being thrown into a mental institution due to meltdown, stories of job loss, loss of family/friends, loss of quality of life. Running into troubles, and then receiving more harmful “help.”

If an autistic is having mood swings; they are merely “bipolar.” If an autistic is reacting, or a times overreacting, to perceived (or real; the difference is hard to tell!) rejection and becomes defensive; they are “borderline.” If an autistic is severely anxious, due to unknown sensory issues and having difficulty with adaptations in life, they are OCD. These labels don’t help most especially when the autism itself is masked and missed.

Bipolar, borderline, OCD, schizoid, agoraphobic etc. in an autistic especially; they are mostly what they are not. Yes, it is true, that autistics, just like any can develop mental imbalance (“illness”) and personality divergences, excacerbated by social/interpersonal trauma (aka “disorders”). While it's true that sometimes this occurs, in surface features especially, it can be rehabilitated with the correct core diagnosis.

Those are all spectrums too. However, I find that the autism, which is the “bulb of the onion” (and trauma would be the thing applied that creates the others) makes one much more prone to stressors and challenges. If this is identified, there is a good chance of rehabilitation, reversal, and recovery of the comorbid, and to thus thrive in the gifts of autism.

For example, I think that if a person with an alcohol problem doesn't know that they actually have aspergers', and this in the main reason they are drinking to cope; they'd have a high chance of relapse.

If a person doesn't know their "borderline" behavior is just a combination of trauma and genuinely not being able to read the face and/or social cues, and therefore overreacting to real or perceived rejection due to lack of self esteem; they could even get worse, not the mention living with stigma.

We put our trust into these psychiatrists, although we're smart and can just trust ourselves... and then their closed minds and oppressive ways mislead us into further crap!

Another unrecognized issue is that most autistics need less of a medication for it to work, even if they “need” it. If they have more than needed, it could do more damage.

I still feel that awareness, the right supports, lifestyle changes, and a good recovery plan all around could be enough to reverse a lot of mental states. It depends I guess. Sometimes medication is needed, but it should be treated less carelessly, especially when it comes to sensitive people.

Misdiagnosis, when it also causes the “Missed Diagnosis” of asperger/autism; it can be very harmful. It can cause a person to go over the edge. They could melt down so bad they may not come back. They could waste away with eating disorder and/or addiction. This is because something crucial, the missing piece to the puzzle...the real diagnosis...was missed.

How does the presenting "diagnosis" help in the absence of this? It rarely does. This is to some degree with everyone, but autistics are especially sensitive to being subjectively judged and labeled like this. It creates further detriment to the self-esteem, which disables one from healing. An autistic is often instinctual enough to feel that “something has been missed” and this is painful, as well as bewildering.

I think if there would be any other label to help an autistic, it'd, again, be "post traumatic stress disorder" in which is indeed the root cause of the comorbid mental health challenges anyway. Ideally though, a diagnosis could be autism and PTSD. This combination really needs to be identified more often, as one really needs the right help for it.

Why all these harsh diagnostic labels though? I don't know exactly, other than to think one reason is to push meds, and the other being is to cause devaluing. Psychiatrists, in the public system most especially, tend to be incredibly subjective and judgmental people.

They are often not very nice, though sometimes this diverts. I've come across some nasty ones. I've had terrible luck and trauma to boot. I've also heard others' very painful horror stories regarding this.

I think it was my meltdowns that had repeatedly brought me into being followed by psychiatry. My meltdowns were seen as what they're not, which is nothing unusual; they almost always are.

They appear to be “alarming” of course, but what's not understood is that it's a transient thing. To others, a meltdown can look like a mental illness, even a psychotic episode. It's not; it is neurological.

The underlying causes may be different than what it appears to be, or what is thought based on precedent. I myself don't understand how one can just buy into a rigid precedent and not take varying factors into consideration. I just don't understand it.

The autistic may be very hard on themselves as well, and can learn to suppress meltdowns to the extent that they are not noticed. There are many ways we can do this; shutting down, self medicating or using alcohol and any other unhealthy escapes, TV/internet/gaming addictions, obsessions/special interests, eating disorder, self harm such as extreme nail picking or even the most dreaded types of self harm.

I'm not saying self harm is good...it's not at all. I am saying that the more the meltdown is internalized as an escapism, the worse it is for the internal body. When the meltdown is occurring internally, it's terrible for the health. What's the answer? Let oneself shriek and flail and script and do whatever is needed to release? If necessary yes...find a way; go to a quiet beach. Easier said than done.  

This is what I should have done, but like most of us, and after doing it and being failed/mistreated; I felt I couldn't anymore. I began to repress and do things to help sometimes. It was so harmful.

I think the best solution is to do one's very best to prevent meltdowns, or at least the severity of them, by being aware of the triggers and working with the traumas. If one needs to shut down, so they don't melt down, they must take care of themselves.

Anyway; misdiagnosis causes harm. It causes self-esteem issues, wrongful judgments, stigma, wrong medication experiences, self-medicating, and all the problems that come with one being unaware of their autism and autistic stress. It's almost inevitable. Well, unless you come from a very particularly structured family and set of parents.

I did know one girl. She was a close friend in elementary school (third and fourth grade. I went to a few different schools.) She thrived although I highly suspect her of being an aspie (when remembering some of her behaviors.) Her parents were very caring and solid, structured and stern. Their communication with their kids was a superb balance of love and discipline. I think aspies would thrive on that. She has. She is at Harvard. This is a rare example though.

From what I can see, damage is done in one way or another; when a clinical autistic gets missed. There simply needs to be more education on the more insidious autism spectrum conditions, in both children and adults. There is the least known about autistic women, so we are hit very hard with the misdiagnoses.

Neuropsychology is much better at understanding the interacting effects of autism combined with environmental, social and sensory stress, than psychiatry is. The kind of professional needed, at this time, is barely accessible in the public system. This has been very disheartening.

Difference is all too often interpreted as a threat, rather than celebrated, appreciated, and understood. This is where the problem lies with many hierarchal people. In my heart there is no hierarchy. Well no, it also seems that the hierarchal order is jumbled up and wrong. Back to my last thought, we need more education and people need to be more open. Can we somehow put this into requirement?

Rosie @ girloutside.org