Preparing for My First Encounter with an Autism Specialist

Remember how I said I knew nothing about Autism, other than what I had seen in the movie “Rain Man?” I meant it. I knew nothing! Yet, here I was... about to walk into a developmental evaluation, for my daughter, with the recommended “Autism Specialist”.


Let’s be honest. Research was a little more difficult and time consuming in 1999 than it is today. Regardless, I researched my heart out. I read everything I could get my hands on, at the library... which wasn’t much, as it was clear to me that IF my daughter was on what I had learned was called the “Autism Spectrum,” she would be what many referred to as “high functioning.” She did not sit in a corner and flap her hands, sit silently and watch a ceiling fan spin, and she was not “non-verbal”... just a few things I had read were common characteristics of children who were “Autistic.” Of everything that I had read, it made the most sense that my daughter fell somewhere on the Autism Spectrum around “Asperger’s Syndrome.” Thus the reason there was little information, in my local library. Here is a quick, little history lesson for you, that will explain why:


In the early 1940’s, at approximately the same time that Leo Kanner was doing research, in America, that described what is now considered Autism Disorder, Hans Asperger, a Vienesse pediatrician was doing similar research in Nazi Vienna. The main difference in their respective research was that Hans Asperger was studying boys who displayed Autism-like characteristics, but had normal language development and intelligence. I could write indefinitely about Hans Asperger, but the important thing you need to know is that it was difficult to find information in 1999 about Asperger’s Syndrome, because not only was the majority of his early work destroyed in a World War II bombing, but get this.....


HANS ASPERGER’S WORK WAS NOT RECOGNIZED IN THE WESTERN WORLD UNTIL THE 1980s!!!!! AND... Asperger’s Syndrome was not included in the DSM-IV, as an Autism Spectrum diagnosis until 1994!!!


What the hell is a DSM-IV, you ask? Back to my research...

There was information on the internet, but nothing like you can find, nowadays. I had managed to find a message board, online, where parents of children on the Autism Spectrum were talking to one another about their experiences. Not one single parent that was in that group had a daughter on the Spectrum. It was all parents of boys. At the time, I had no idea that it would make a difference. Autism was Autism, right? Wrong. But, it would be years, before I really figured that out.


In 1999, the criteria for diagnosis on the Autism Spectrum were laid out in the DSM-IV (Diagnostic and Statistical Manual of Mental Disorders). Using the DSM-IV, a person can be diagnosed with four separate disorders: Autistic Disorder, Asperger’s Syndrome, Childhood Disintegrative Disorder, or the “catch-all” diagnosis of Pervasive Development Disorder Not Otherwise Specified (PDD-NOS). There have been many versions of the DSM. The current version is the DSM-V, which controversially removed Asperger’s Syndrome, as well as the other Pervasive Development Disorders from the four different diagnoses contained within the Autism Spectrum, and just labeled them as ”Autism Spectrum.” This change did not occur until 2013. I will address that change in a future post, but know this... had that change occurred prior to 1999, our journey would have either been even more difficult, or much, much easier. I know... it doesn’t make sense to me either.


I am about to bore you, but it is of critical importance to understand the criteria used, in 1999, to determine whether or not my daughter would be eligible for services... for the rest of her life. So... here you go. Don’t skip it! Below, is the criteria for Autistic Disorder, the defining disorder of the spectrum:


DSM IV CRITERIA FOR DIAGNOSING AUTISTIC DISORDER*


A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):

1. Qualitative impairment in social interaction, as manifested by at least two of the following: a. marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction. b. failure to develop peer relationships appropriate to developmental level. c. a lack of spontaneous seeking to share enjoyment, interests or achievements with other people (e.g., by a lack of showing, bringing or pointing out objects of interest. d. lack of social or emotional reciprocity. 2. Qualitative impairments in communication as manifested by at least one of the following: a. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime). b. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others. c. stereotyped and repetitive use of language or idiosyncratic language. d. lack of varied, spontaneous, make-believe play or social imitative play appropriate to developmental level. 3. Restricted, repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following: a. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus. b. apparently inflexible adherence to specific nonfunctional routines or rituals. c. stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements). d. persistent preoccupation with parts of objects.

B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.

C. The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder.

REFERENCE *American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., rev.). Washington DC: Author. (Pg. 75)


Based on my own observations, my daughter met the criteria of A.1.a, A.1.c, A.1.d, A.2.b, A.2.d, A.3.a, B, and C, and possibly A.1.b, although she did not present some of those items strongly, I could still see it. But, because the presentation of some of those items were not blatant and there were definitely criteria that she did not meet... I doubted myself. However, if you dig deeper into the criteria for diagnosis, for each of the four possible diagnoses on the spectrum, you get this:


DSM IV CRITERIA FOR ASPERGER'S DISORDER*

A. Qualitative impairment in social interaction, as manifested by at least two of the following:

1. marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction.

2. failure to develop peer relationships appropriate to developmental level.

3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g. by a lack of showing, bringing, or pointing out objects of interest to other people).

4. lack of social or emotional reciprocity.


B. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:

1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus.

2. apparently inflexible adherence to specific, nonfunctional routines or rituals.

3. stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements).

4. persistent preoccupation with parts of objects.


C. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning

D. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).

E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than social interaction), and curiosity about the environment in childhood.

F. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.


REFERENCE

*American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., rev.). Washington DC: Author. (Pg. 84)


After reviewing the criteria for Asperger’s Syndrome, I believed that my daughter met the criteria for A.1, A.3, A.4, B.1, C, D, E, and F. And, again... possibly A.2, which is the same as A.1.b for Autistic Disorder.


THIS... THIS... made sense. In my observation, my daughter solidly met the criteria for Asperger’s Syndrome. The bottom line is that Asperger’s Syndrome is distinguished from ”classic” Autism by less severe symptoms and the absence of language delays. I also reviewed the criteria for diagnosis of Childhood Disintegrative Disorder and PDD-NOS. I will spare you the cutting and pasting of those criteria, as at this point in my research, I really thought I was done. I believed, in my heart, that my daughter had Asperger’s Syndrome. Not only because of the criteria I felt she met, in the DSM-IV, but because she absolutely, at that point in her life, had the following characteristics of Asperger’s Syndrome:


  1. aloof and uninterested in others

  2. not understanding of social rules

  3. lacks empathy

  4. limited eye contact

  5. does not understand the use of gestures or sarcasm

  6. unable to interpret facial expressions

  7. unable to verbally express feelings

  8. obsessive, or borderline obsessive, interest in certain subjects

  9. excellent rote memory skills, but struggle with abstract concepts

  10. unusual speech patterns that lack inflection or have rhythmic nature

  11. does not understand subtleties of language, like irony or humor

  12. do not understand the give-and-take nature of a conversation


I would like to note that, today, at age 23, when my daughter is doing well, she is able to disguise her struggles, and many of the characteristics of her diagnosis. She uses tools, every... single... day... that we worked our asses off to find or create, to help her function in a world that, often, does not make sense. Many of the characteristics, above, do not present themselves, unless she is generally struggling... and then... BAM! There they are... bigger than life.


I find it interesting that I feel compelled to have to say what I did, in the paragraph above. Here’s the thing... Writing about my daughter’s evaluations and initial diagnosis brings up some really horrible memories and feelings. How I felt when some friends and family, around me, could not see the Autism Spectrum characteristics that my daughter displayed and that we both struggled with, on a daily basis, well... let’s just say that I spent most of her life feeling as though I had to justify her diagnosis. And, here I am... feeling the same way, as I write this. I shouldn’t. I know that. But, I do.


So, I digressed a little from the title of this post, here in the end. But, that is the whole point of this blog. It is to share my experiences and feelings, through the journey of diagnosis, and living the life of a parent of a child on the Autism Spectrum... to share it honestly and unabated, because I know that I am not the only one who has felt what I have felt, or needed support, so desperately, without knowing where to find it. And, it is the feelings that come up, in writing these posts, that remind me of my biggest struggles, and what I really need to be writing about.


Next time... the first evaluation, Early Childhood Special Education, a shitty teacher, and the BIG evaluation that could have set us up for failure, if I hadn’t taken the advice of a dear friend, that taught in Special Education, and been “that bitch mother I hate to see coming.”




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