Aspie Girls

I will be starting graduate school in about a week. I have recently had to deal with the disability services at the university that I will be attending. I don't require much in the way of accomodations, but it turns out that what I do require is causing a bit of a fuss. It has been recommended that I have a private office space because of my sensory issues and tendency to talk to myself while reading. I wouldn't have thought that this would be that huge of a deal at the graduate level, but it is turning out to be somewhat of a nightmare. It isn't that people don't want to accomodate me, it is getting them to understand why accomodations are in order. Naturally, I don't want to disclose more than I have to, but it turns out that I am having to disclose more than I really wanted to.

In theory, when one deals with disability services, a minimal amount of disclosure is required. Generally, a letter is sent out stating that disability services is in possesion of documentation to support the requested accomodations. In my case, this wasn't enough. The folks in charge of allocating space at the university as well as my department of study ended up requesting the specific reasons for the request. This is upsetting to me, to say the least. Graduate studies are serious business. I don't want them thinking that I am somehow less than capable. As anyone who has ever been to graduate school can attest, having the faculty doubt your ability can be damning, to say the least. When I saw the letter that was sent out to the building explaining the specific reasons why accomodation was needed, it read like I am some sort of basket case. The mental image generated by their description of my particular areas of disability leed one to wonder if I am even fit for a university setting in the first place.

I startle easily. I have significant issues with focused, sustained attention and am easily distracted by sounds and movements that would be considered reasonable to most typical individuals (i.e breathing sounds, chair shifting sounds, paper shuffling, etc.). Most sounds that would be typical of a shared office setting would result in my being unable to focus and study. I could wear headphones to eliminate sounds in my environment, but this would generate a good deal of anxiety for me. I tend to worry a lot about what others may be thinking about me since I am not so great at reading peoples social undertones. In addition to the distractability issues and the social anxiety, I also have a tendency to talk to myself while I am reading or assimilating large amounts of information. This could be distracting to the people around me, but it is necessary for me to take in and use the information that I am studying.Ugh..... Did anyone happen to notice that I had a 3.87 GPA in the last program that I attended? That I have lecture experience and was the head teaching assistant in my last program? Probably not. They are more likely left wondering if I faked my application!

In all of my past experiences with university course work, I have actually never had to contact disability services for accomodations because I have been very fortunate. A private office space was a simple request that more or less went without question. I didn't need to prove anything. In the past, I have just mentioned that I have significant "sensory issues" that are documented and I have subsequently been allocated space in a dark, dusty unused room in the basement. The accomodations haven't been glamorous, but they have been functional. In this current situation, I have been put in a position where I am being made to feel like others think that I somehow feel that I deserve unfounded special treatment. This couldn't be further from the truth. I have actually been sent an email explaining that standard procedure mandates that there be four graduate students to a single office and that my request will set a precedent. The entire situation has left me wondering, "How much disclosure is enough?" I can understand and appreciate that providing documentation to disability services is necessary in order to help one identify what accomodations are necessary and to also prove the medical basis for accomodation, but how much information should individuals outside of that office be given? At what point am I disclosing too much? The university has a whole department specializing in the special needs of students with legitimate and documented disabilities! Shouldn't the university as a whole trust the discretion of the department they enlisted to screen the validity of an individuals needs and the resulting accomodations?

Since writing my last blog about Cassandra AffectiveDeprivation Disorder (CADD), I have really been thinking a lot about how the issue makes me feel as a woman with Asperger's Syndrome (AS). In my opinion,one of the most negative aspect of the CADD diagnosis is the idea that the parent or partner with AS has a negative effect on the mental health of the family. It is this notion that the AS individual is overtly self-absorbed in their areas of special interest at the expense of the emotional well being of their family that suggests that the individual is somehow unfit to raise children. While I can both understand and appreciate how living with someone who is likely a little cold or aloof, stubborn and rigid, eccentric, not so great with communication and prone to obsessive interests could depress the mood of a family, I wonder how deleterious the effects really are. The degree to which individuals with AS are effected varies greatly. Certainly some of us really are so wrapped up in our special interest areas that we scarcely surface to eat or shower, but are we all this way? The simple fact that some of us have managed to mate and reproduce would suggest other wise.

There is little dispute that individuals with AS actually long for human interaction, so why do we have such a negative stereotype? I honestly think that it is because a negative“story” draws in a lot more attention than a positive one. Who wants to hear about the Aspie mother who’s obsessive interest was child rearing or the Aspie man who turned his obsessions into a lucrative career that could support a large family? The fact is that stories such as these really do exist; they simply don’t draw as much attention as stories of individuals whose behaviours result in emotional neglect or abuse.

I have a tendency to obsess over topics that are appealing to me, just as many Aspie’s do, but I have been fortunate that some of my interests have been beneficial to my family and not just me. In fact, when I look back on my life through the lens of Asperger’s Syndrome, it is obvious that much of my success as a parent is a direct result of my propensity for obsessive interests. While it is true that I do struggle to find the right balance between “me time” and “family time”, the emotional and educational interest of my children typically comes first. They are my own personal experiment in child rearing and I marvel at the many different ways in which I can mould them and direct them. I am immersed in one of my favourite obsessive interests everytime I interact with my kids and I can honestly say that I feel no guilt over time spent researching them.

Another positive aspect to the "obsessive interest" that is almost always overlooked is the ability to share that interest with your family. I am an Aspie with many and varied areas of special interests and this makes me “interesting” to my kids. It is not unusual to find our family out traveling the country side in search of “information”. From collecting rocks and plants to investigating the paranormal, our family is never at a loss for things to do because I share my obsessions with them. It was the easiest way to turn an otherwise solitary activity into quality family time without totally compromising my need to know more!

In closing, while I can see the potential for emotional neglect in a relationship with someone who has AS, I can also see the potential for just the opposite. It all depends on your level of self-awareness and your understanding of your “different ability”. I believe whole-heartedly that Aspie parents have the ability to be great parents.

If you have a story about how you feel your Aspie or Autie traits have had a positive influence on your family life post it in my thread on "Traits of a Positive Parent. http://www.aspiegirls.com/apps/forums/topics/show/1033107-traits-of-a-positive-parent

Recently, Dr. Tony Attwood appeared on the Autism Hangout video blog site and made a reference to a concept known as the "Cassandra Phenomenon". Dr. Attwood is a regular guest on the show and can be heard making many positive and upbeat responses to audience questions in "Ask Dr. Tony". Dr. Attwood's reference to the phenomenon has sparked massive controversy in the autism community and has even resulted in an online petition being passed around the internet. What exactly is it that Tony Attwood said that has everyone so upset?

Cassandra is an image derived from Greek mythology. She had been given the gift of prophecy by the god Apollo, but when she refused his romantic gestures he cursed her so that no other would ever believe her prophetic words. The "Cassandra Phenomenon" is, therefore, a metaphor that is often used in situations where the warnings or concerns of another are ignored or downplayed. The metaphor is not unique to psychology and is used to describe situations related to climate change as well as issues relevant to business dealings. In the episode of  "Ask Dr. Tony" in question, some place around 7 minutes and 45 seconds into the video, Dr. Attwood can be heard making a reference to this "Cassandra Phenomenon" in response to one woman's questions regarding her husband who possibly has undiagnosed Asperger's Syndrome.

http://www.autismhangout.com/news-reports/feature-programs.asp?id2=103

The real controversy comes into play because of a lesser-known "disorder" called Cassandra Affective Deprivation Disorder (CADD). Maxine Aston, author of the book The Other Half of Asperger's Syndrome and Asperger's in Love, has coined the phrase.  Aston is a Relate councilor working in the UK who deals exclusively with couples coping with Asperger's Syndrome and Autism in their relationship. The symptoms of the so called "disorder" are said to be very similar in nature to Seasonal Affective Disorder and it is thought to be a direct result of living with a partner who has undiagnosed Asperger's Syndrome. The "disorder" does not appear in the DSM-IV or the DSM-IV-TR and should not be confused with Affective Deprivation Disorder (a disorder that may be included in the upcoming DSM-V). While similar to Affective Deprivation Disorder, CADD is a disorder that is supposed to be unique to couples where one partner is neurotypical and the other has undiagnosed Asperger's Syndrome. There is a great deal of concern over the notion that family members may be suffering from depression as a direct result of living with a spouse or parent who has undiagnosed Asperger's Syndrome. This is largely because there are far reaching implications for the "fitness" of such parents in child custody disputes. Divorce rates are high amongst those with Asperger's Syndrome due to their struggles with interpersonal relationships and diagnosis such as CADD just add insult to injury. Individuals with Asperger's or High Functioning Autism may have a great need for solitary activities in a relationship and may have fewer emotional needs than their neurotypical partner. They may not understand or appreciate the social and emotional needs of their spouse and children and this could possibly result in the non-Asperger's family members feeling emotionally deprived. This emotional deprivation might then lead to a depressive state (i.e. CADD). The idea that spouses and parents with Asperger's or High Functioning Autism may play a role in the degradation of the mental health of the family suggests that there is something inherently sinister about the individual who is also, incidentally, coping with Asperger's Syndrome. I do not agree that one family member having Asperger's Syndrome is, in and of it's self, sufficient grounds to determine who should have custody or visitation of the children. Dr. Attwood has himself stated in defense of his comments that  "...having a diagnosis of autism or Asperger’s syndrome does not render a person automatically incapable of being a good partner and parent. Indeed, many of the people I know with autism and Asperger’s syndrome as clients and friends are exceptionally good parents and partners (http://www.faaas.org/doc.php?29,358)." Similar quotes can be found in Tony Attwood's books, as well. I believe that Dr. Attwood supports spouses and parents with autism and to place blame on him and accuse him of supporting "hate groups" as one website has suggested, is overly critical. I believe that the real confusion is over the use of the metaphor "Cassandra Phenomenon" as opposed to Astons suggested "Cassandra Affective Deprivation Disorder". The subtle difference between these two phrases and their implications is at the root of the controversy surrounding Dr. Attwood's comments. Personally, I think that Dr. Attwood is a wonderful advocate for individuals with autism and Asperger's. 

On the subject of Maxine Aston, I have read some of her books and found them to be very informative. I have even written a positive review of her book Asperger's in Love. It is clear that she has an incredible amount of practical experience in dealing with couples coping with autism and Asperger's Syndrome, but I am going to have to agree to disagree with her on the CADD idea. I was a little shocked to learn about her so-called "disorder". It is important to keep in mind, however, that she is a councilor and not a physician. She is only one person with one opinion. While it is true that she has a lot of experience to back her claims, she alone does not determine what constitutes a true disorder. I think that Cassandra Affective Deprivation Disorder bears far too much similarity to other existing disorders that are not specific to Asperger's Syndrome or Autism and feel that it is unlikely that her CADD will ever find a place in the DSM. Her expertise as a councilor is unquestionable, but her diagnostic abilities may be a little wanting. Nonetheless, she has written some really useful books and it is clear that her intensions are to help, not hurt. I think that the autism community would be well served to find ways to highlight examples of relationships between neurotypicals and autistics that have worked and not fixate on the ones that have been disastrous. We need to showcase examples of good "Aspie" parenting to show the world that we can do a superior job of parenting our children. We Aspie's can be pretty good at thinking of the worst sometimes. Let's try to remain positive and focus on creating and maintaining positive and healthy relationships with the ones closest to us.