If it is Wednesday, it must be time to take a look back at last night’s episode of Parenthood on NBC. I’m just happy I do not have to wait until Thursday to write this, since Amber shocked me for the second straight week and stayed awake the whole time.
Last night, part of the episode was devoted specifically to Max and his obsession with the lack of a vending machine at his school. Apparently, in past years, there was a vending machine in the hallway, where students could get a snack (for Max, Skittles) anytime of the day, except for “during class” as Max pointed out.
When he realizes that the vending machine has been removed, Max is set off. You could see the meltdown coming, and it was not pretty. Having the vending machine put back becomes Max’s sole focus throughout the entire episode. At various points during the episode, Max is shown talking endlessly about the lack of a vending machine; in school to random people, at home while his friend is over, to his cousin when she picks him up from school (a whole different issue with an unexpected change to his routine), and to his dad. As the episode concludes, Max decides the best way to get the vending machine back is for him to run for student government president. I cannot wait to see how this develops as the season continues.
I noticed a lot of similarities between Max and Kaitlyn during last night’s episode. No, she does not have an obsession with Skittles, although she does enjoy them. The similarities I saw were with the pure obsession with one topic in particular, an obsession that was so intense that it became the sole focus of Max. Kaitlyn does that. Frequently.
For the past month or so, her obsession has been Rainbow Magic books. All she wants to do is read those books. The series is all that she wants to talk about. She thinks she is getting a new book every week. She expects us to be experts on each fairy, and will quiz us at different times. Right now, there is nothing else that she will even remotely concern herself with for more than a very short period of time. She either does not realize or does not care that not everybody shares her interest in or her level of expertise about the series. I am happy and excited that she is so in to reading the books, and I have no desire to tell her she cannot read them. On the contrary, we are going to continue to encourage her to read the series and expand her reading abilities (the series is generally written for students above her grade level).
The ability to focus so intently on one subject area that those with Asperger’s have is unreal. Yes, it can be frustrating to people who do not interact with them daily, and occasionally frustrate people who see them daily. But, it is also something to be admired. How often do we sit around and get distracted? For the most part, a neurotypical person is kind of like a cat that gets distracted by a shiny object. Aspies have the ability to have a laser-like focus on one thing in particular, and will become subject matter experts in short order if allowed to pursue said obsession. The difficulty comes from convincing Kaitlyn that it is ok to diversify; her Rainbow Magic books will not get jealous if she spends time playing with her Barbies (to be fair, I have seen her reading to her Barbies and her stuffed animals).
While people with Asperger’s often share a large set of similar characteristics, it is a good idea to remember that they are all substantially different from each other as well. Temple Grandin said it best, “when you have met one person with autism, you have met one person with autism.”
I read an article yesterday on the Today Show’s website about something called Williams Syndrome. Williams Syndrome is described as sort of the anti-autism.
Where autism spectrum disorders, including Asperger’s, are marked by social awkwardness and shyness, Williams is the complete opposite. People with Williams are described as “having never met a stranger,” where those with autism tend to be more cautious around strangers (not always the case).
The article goes on to state that scientists have identified 25-28 genes (out of 30,000) in the brain that are responsible for causing Williams.
I read the article twice, just to make sure I could formulate and articulate an intelligent thought. My thought is that it is good that scientists search for causes to things like Williams and autism, but let’s not be so quick to hope for a cure. Cures should be for things like cancer. For autism, if a cause is ever definitively found, it should then be used to develop even more effective therapies, not a cure. It comes down to what Temple Grandin has expressed about the great innovations in our culture and that they are possibly attributable to someone with Asperger’s or autism. Let’s take a cautious approach in hoping to cure everything.
For as long as I can remember, my family and friends have pointed out certain little things about me that were just a tad “off.” Nothing too major, just little things about my personality and behavior that stuck with them. Since our journey of receiving a diagnosis for Kaitlyn began last October, I have been reading up and educating myself on autism and Asperger’s.
The more I read about the characteristics of Asperger’s, the more almost every word on the page or screen sounded somewhat like me. Not one to stop at first glance, I decided to try to learn more. That is when I came across an autism/Asperger’s test online (here). I have not and will not fool myself into believing that the results of that test are a definitive diagnosis, but it is important to note that 80% of those that took the test and scored a 32 or more were on the autism spectrum or had Asperger’s. I figured I would give the test a shot though, just to see. I took it in a way where I went with my first answer, knowing that it would be the most honest answer; I thought that if I took too much time to really get in-depth about each question, I would start to over-analyze what I thought the answer should be. I scored a 36 on the test. Amber took the test and scored a 4. My mom scored somewhere near what Amber did. My dad scored in the 20s-30s I think. And my brother scored close to what I did. Again, none of us are taking the results as proof of anything, but the results were a little telling.
As a child, I was rather shy (like Kaitlyn), and really had no desire to be around too many people. (I am still like that today.) I was prone to meltdowns for no reason at all, and from what I gather, they were pretty bad (again, something that may still rear its head with me). I can surely become fixated on one topic and absolutely bore people to tears with information about it (read here for examples) or I can take information to the extreme in order to prove a point.
I am not known to have much of a filter, as my employees tell me almost daily. I tend to say the first thing that pops into my head with little regard for other people’s feelings (just happened recently by mistake when my response to a question was taken in a way that I did not intend and caused a little bit of a disagreement).
I am loyal, almost to a fault. I have had the same best friend since I was about 12 or so, and I tend to keep a rather close circle of friends that I trust. I prefer not to be in crowds at all, and really have no use for socializing with people just for the sake of socializing, but I have little trouble in interacting with friends and family. I am picky eater and tend to choose what I eat by texture and smell (I have no use for salad at all) and will eat pretty much the same thing almost every day if I could (pizza, pasta, etc.).
To say that I am somewhat structured or set in a routine would be an understatement. A few months ago my friend Ryan posted a question on his Facebook asking what time people woke up every day, left for work, etc. I did not comment on that, but it would have been 100% accurate for me to have said I wake up at 5:43 every day, start getting dressed at 6:55, and would leave the house at 7:33 to take Kaitlyn to school (this has changed with summer camp, and we now leave at 7:38). I have a certain way to go up and down the stairs at my house, and I check the door locks a certain number of times before going to bed every night….maybe that is partly OCD, but you never know.
I have not taken the time to call to schedule an appointment to see if I should be evaluated to determine if I am on the autism spectrum or have Asperger’s. I might not even ever do it. But then again, I just might. In her book Thinking in Pictures, Temple Grandin theorizes that there may be a genetic passing of autism/Asperger’s from parents to their children (1). A study in The Journal of Autism and Developmental Disorders by G.R. Delong and J.T. Dwyer indicated that over two-thirds of families with a high-functioning autistic child had a first or second degree relative with autistic traits (2). Similarly, it has been found that parents of autistic children, especially the fathers, had a tendency to pursue a special interest single mindedly, and they were likely to have poor social skills (3). I have already noted my preference to pursue certain things single mindedly and my preference to avoid social situations wherever possible, and also the scores of both my dad and brother on the autism test. All of that is making me lean toward being evaluated, if for no other reason than to answer some things about me that just don’t seem to add up.
(1),(2),(3): Grandin, Temple. Thinking In Pictures pg. 205-206.
Just for kicks, I recently went and Googled “autism cure” and was interested in what I found. There are several sites that proclaim that either they 1) know the cure for autism or 2) are helping raise funds to find the cure.
The notion of a cure for autism spectrum disorders is a little misguided to me. First, to be something that can be cured, autism would have to be a disease; autism spectrum disorders are not diseases. You either have an austism spectrum disorder or you don’t. You don’t develop autism like you would cancer or heart disease. Autism spectrum disorders are neurological in nature, diseases are pathological in nature. Giving an autistic individual or their family hope that a “cure” is out there is a little cruel. Besides, would you know the former autistic person once they were cured? Autism spectrum disorders help shape who that person is, and how they interact (if they interact).
And to paraphrase Temple Grandin, why would we want a cure for autism? Maybe the most extreme cases where the person is low-functioning, but even then I don’t see the need for a “cure.” One of my favorite quotes/writings from Temple Grandin says “…after all, the really social people did not invent the first stone spear. It was probably invented by an Aspie who chipped away at rocks while the other people socialized around the campfire. Without autism traits we might still be living in caves.” (Thinking In Pictures, page 122). I don’t know how I can do justice in expanding on what she said. Some of the most important, ground-breaking discoveries and inventions over the course of human history can likely be attributed to an individual with autism…someone with a laser focus that is unconcerned with how high they climb up the social ladder.
I hope that no cure is ever found for autism. We would not know who Kaitlyn was if she were suddenly not an Aspie. I am all for continued and expanded funding for autism research and therapies, but let’s stop short of curing something that really does not need to be cured.
Dr. Temple Grandin. Vernon L. Smith (Nobel Laureate in Economics). Professor Richard Borcherds (Fields Medal Winner). What do all of these people have in common?
The aforementioned all have been diagnosed with Asperger’s or high functioning autism, same as Kaitlyn. Other speculated to be autisic or be an aspie include Bill Gates, Paul Allen (Microsoft co-founder), Albert Einstein, Sir Isaac Newton, Al Gore, Jim Henson, Warren Buffett, Charles Schultz and scientist Paul Dirac (of Dirac Science Library fame on FSU’s campus).
The more research I do into Asperger’s, the more I find that the outlook for Kaitlyn is amazing. With the proper support structure in place (Amber and I) and access to appropriate educational tools, the sky is the limit, and that brings a huge smile to my face. As each day passes, the image of those with autism slowly fades from that of Raymond Babbitt in the movie “Rain Main” to that of some of the most successful people in the world.
I look at the research that Dr. Grandin has and is conducting in the humane handling of livestock and become more impressed every day. Dr. Grandin was “weird” in school growing up but found that one person to believe in her and mentor her, and she took off. Dr. Grandin was the subject of a critically-acclaimed HBO documentary that bears her name, and has written some wonderful books from an “insider’s” perspective about autism. Dr. Grandin is not an aspie, but has high functioning autism, and offers hope to parents like Amber and I that with the right support, Kaitlyn can achieve anything she desires. I cannot wait to read Dr. Grandin’s latest book.
Some days are better than others for Kaitlyn, and for us, but knowing that the future is limitless for her potential is wonderful. Kaitlyn is a brilliant child that amazed us daily (and sometimes frustrates us daily). We continue to be blessed to have the opportunity to develop Kaitlyn and learn more about Asperger’s and autism, and continue to look forward to our growing role as educators and advocates for those on the autism spectrum. We have a great support system that is starting to take shape, and are thankful to some very special people in their support of us and of Kaitlyn; the kind words and encouragement we receive almost daily help make us stronger and better parents. So while Kaitlyn is in good company with all of the previously mentioned people, so are Amber and I for those who support us.