What Is the Big Deal About An Autism Diagnosis?

On January 3rd of this current year, I underwent what is called a neurophychological workup, which started out with an interview with a lady. I brought along several materials from an autism center, questionnaires that included questions asking me about past and present "symptoms" of an Autism Spectrum Disorder (ASD). One questionnaire included a checklist where Mom, my husband, and I circled the answers to the same questions in different colors of ink. I provided a copy for the neuropsychologist, who was filling in for another neuropsychologist I was expecting to see. That person popped his head in the room where I was being interviewed for just a few minutes and I mentioned my concerns. He said, "I see that you have been told many things and given many labels about yourself, like OCD, Asperger's Syndrome, and other psychiatric labels. We here are specialists in epilepsy and you have shared that you have a history of that. I don't think you are aware that epilepsy and side effects of medications to manage it can cause many problems that may make you seem to be OCD or have mental health issues. We are glad you are here and glad to help you find your answers." This person was nice enough and well-meaning, as well as friendly with my husband. However, I could tell from the start that he was biased in favor of epilepsy, his specialty and the field that he was best equipped to form professional opinions on. And he made these above statements BEFORE I began a full day of a battery of tests.

Just yesterday, after almost a month of waiting for my promised summary letter of the "results" of my January 3 appointment, the letter finally arrived in the mail. I opened it up later yesterday afternoon, and I was profoundly disappointed and angered at the "results" but because of the biases of the examiner, I was not surprised in the least of what his summary letter, just a page long, said. It reads. "It is noted that many of your previous psychiatric, behavioral, ans social difficulties may have in fact been related to your epilepsy, rather than to psychiatric disorders." Then came the blow that hurt most of all! "Of note, it is NOT (emphasis mine) believed that you suffer from an Autism Spectrum Disorder." Thus I went to a four hour round trip to undergo a workup, in large part not relevant to screening a person for different brain wiring and which was a bad referral. No diagnosis. No answers. No relief. No validation.

I'm not denying that epilepsy has a major impact on people's daily lives, like any other neurological condition, especially ones of its kind which carry stigma and are widely misunderstood. A number of the items I was tested on in my January 3 appointment were relevant to the side effects of long-term use of prescription medications that I had to take to control seizures (thank God, my current Depakote has fully controlled my seizures for about 16 years but at the cost of major side effects). Testing involved memory tests and other forms of cognitive function, which have been affected by my long-term medication treatment. My main problem with my "results," which include no diagnosis of any kind, is that I know that epilepsy cannot explain my lifetime of social, emotional, and behavioral challenges. Take my lifetime of OCD-like thinking, my repetitive behaviors and obsessive interests, and my insistence on routines. Can those be explained by epilepsy? I think not, especially as they were present early in my life! Take my lifetime of profound social disabilities, my dislike of socializing and making small talk, my inability to initiate or carry conversations, my inability to establish close friendships; these were present from early in my life! Can epilepsy explain those? I think not. I do not doubt that the effects of anti-epileptic meds, the trauma of seizures and stigma can cause emotional and social reactions which mimick some of what I listed above.

I got the that January 3, 2013 appointment by default, I believe and it ended up as an inappropiate ferral for what I was looking for last year. I was looking for an autism specialist who had training in autism and who would screem me for an ASD. Last year 2012,  I had been making many calls requesting a person to screen me for an ASD as an adult. I was given the name of a person, and it was only later that I realized that this person was a neuropsychologist and these professionals usually do not have autism training or expertise; their expertise lies in general brain and cognitive functions and dysfunctions. That does not include any psychiatric or mental health conditions and as ASDs are now placed in the mental health category, neuropsychologists do not specialize in ASDs. Even when I realized that and knew I got a bad referral, I chose to keep the January 3, 2013 appointment, just to rule out things and to go down every avenue. But last year, I did make an appointment with an autism specialist in that same city, who I should have been referred to from the start. I have an appointment with him later this year on October, 29. But due to personal circumstances which must be kept confidential, I may not be able to keep that appointment. But whatever happens, I will stop at nothing until I can access an appointment with a qualified, affordable autism specialist who diagnoses ASDs in adults.

I have, from the beginning, encountered family opposition to my pursuing an ASD diagnosis. When I shared that I was serious about this with family, I have been told things like, "Autism is just a word," "Autism is a label and you cannot tell anyone because people fear those with labels," "If you get a new label people will treat you even worse," "I believe you have autism; why do you need to see a doctor?", "Getting a new label will not do anything for you," and "It will not change your life, so what's the use?" I have faced resistance also from a couple of my doctors, who have told me, "You cannot have an ASD; you relate to people," or, "I do not believe in Asperger's Syndrome; it is a fad and overdiagnosed." I guess I can understand why so many people think those of us who seek "labels" for validation and to empower ourselves to self-advocate, are making "much ado about nothing" or are "sseking excuses for bad behavior" or "crutches" to limp through life. For I am sure some people have done just this, but I have read story after story by adults who testify that getting an official diagnosis of an ASD has provided them with tremendous relief from years, even decades of feelings of shame, failure, not fitting in, and not knowing who they are or "what is wrong with them." They come to see that they are not bad, slow, lazy, crazy, weird but have brains that are wired differently. They feel more confidence to self-advocate when people "don't get them." A new diagnosis does not magically change lives or undo the past, but it gives meaning to everything and closure so one can focus on the future.

This need for much better access to qualified, affordable autism specialists is only one reason that I have created an autism petition on Change.org. Autism services would not benefit only autistic people and their families. These services would create many new jobs, including entry-level jobs, for those outside the autism community. Most in the autism community, especially parents of autistic children, have been lamenting the need for quality, affordable, universal autism services. Many outside the autism community need job. Services also would help autistic people better themselves, which would make it easier for society to understand them and welcome them. So everyone who cares about these things would be wise to support efforts to gain affordable, quality and universal autism services. It is for that eason that I have created my Change.org petition, which can be found at my shortened link for the Change.org site: http://tiny.cc/mrsahw. I encourage all who read this to visit that link. If you have not signed, please visit here. If you've signed, thank you! Please visit and keep sharing. Or keep sharing this BlogSpot.