Interview with an Aspergian

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Recently a co-worker of mine approached me with a question. She had to do an interview-style paper on someone with a "mental disorder" for her sociology class. As she knows that I have Asperger's, she asked if I'd mind completing a questionnaire for her assignment. I agreed.

She emailed me a few weeks later saying that her professor wanted permission to use this interview as an example of "exceptional scholarly work". I was quite surprised by this statement, but again gave her permission to allow her professor to use my interview as I hope that my message really reached out to her and perhaps will afford me an opportunity to one day speak at the college to a larger audience.

I have already shared this with GRASP, and was thanked for a job "well done". Since it was met so warmly by Michael John Carley himself (I was very excited to recieve an email from him as he's a big inspiration for my personal awareness education efforts ) and the head of GRASP's Philadelphia chapter, I thought I should also share this with the members of Wrong Planet.

Here is the content of the interview:

Interview conducted on August 20, 2008, 3:00 p.m.:

Q: How long have you had this medical condition?

A: I've had Asperger's Syndrome my whole life, though I was unaware until recent years that my social difficulties were explainable by this particular term. I discovered Asperger's, and other Autism Spectrum Disorders, when going through the diagnostic process with my daughter when she was about 20 months old. She was diagnosed with Pervasive Developmental Disorder- Not Otherwise Specified (PDD-NOS). My husband also has AS, and my son is undergoing the diagnostic process for Autism Spectrum Disorders.


Q: What are some of the major changes this condition has made in your daily life?

A: There have been no changes to my daily life, save for the ones I've actively made to improve my socialization skills, as I've always had AS. One of the major differences in my daily life as compared to the lives of neurotypicals (NTs- those individuals who are non-autistic) is that social rules do not come natural to me, and sometimes leave me in awkward positions where people might perceive me as rude, authoritative, insensitive and/or inattentive.


Q: Explain to me how this has impacted the following facets of your life: family, work, social life, and lifestyle.

A: Family: Family life for me has always been very turbulent. No one understood why a girl who read her first book at age 2 ½ did not seem to have an ounce of common sense. I did not pay attention in school and refused to do my homework, especially in those subjects that bored me, but I aced my tests. How well I did in a class was usually tied into how much the teacher counted assignments towards the final grade. This frustrated my parents and I was in trouble a lot for it. The social pressures [bullying] increasingly raised my already underlying AS-driven anxiety, and further pushed me away from having the mental energy to put into things that I didn't particularly enjoy. Not understanding this, my parents just assumed I was lazy, and that caused additional problems.


I understand my behaviors in retrospect, as I am now aware of the driving forces behind them. Now that my family knows, they too have begun to put everything in perspective and have forgiven a lot of the aggravation I caused.


Work: Despite the overwhelming administrative policy for companies to create a solely professional environment by downplaying the existence of social hierarchies in the workplace, socialization is important for one to be successful in their job. I have had many difficulties gauging the appropriateness of certain things I say or do because in an office, people tend to speak "roundabout" rather than being direct. I tend to take things literally and miss out on the possible implications of indirect speech. This has sometimes caused great misunderstandings between me and my past employers and my past co-workers.


Social life: My social life has always been difficult. As a child unaware of my neurological differences, I was troubled by my inability to make and keep friends. I didn't realize that there was more involved than just simply being kind to someone. There were social rules that had to be followed, and I was clueless as to what these were. They're something that isn't taught, rather instinctively known to most people. Essentially if social situations are compared to a poker game, I've been playing it with cards from an UNO deck.


As an adult aware of my AS, I've been able to adapt. It doesn't come natural, but through active observation I have been able to build up a "social database", so to speak. It acts as a rough guide on how to handle specific situations. Its only downfall is my inability to cross-apply the rules for those situations I haven't encountered, though they might be similar to those I had encountered before.


Lifestyle: My lifestyle hasn't been affected as greatly as those who are deeper into the spectrum than I am, however, it does have its subtle limitations. I need time to decompress and "reset" my senses after feeling overloaded. I've also had to put myself in very uncomfortable situations for the sake of making a living. I've worked in telemarketing and customer service type positions where I've stumbled my way through, but dreaded dragging myself into work each day as the social anxiety was sometimes too much for me. My current job is a perfect fit as it's self-directed work, and outside of our department, all of my communications are handled by email, which is an easier forum for me to concisely present my ideas, and be able to proofread them before sending. I stammer when anxious, but write eloquently (or so I've been told).


Q: Can you share some of the coping/adaptations you made in your daily life to live with this medical condition?

A: I pay attention to sensory input and how it directs my behavior. I try my best to recognize a meltdown before it happens and its causes.


Q: What has been the most difficult adjustment?

A: The most difficult adjustment is going through life knowing that I'm different, but trying to fit in without stripping myself of my identity. I want to be me, even with all of my flawed "charms".


Q: What can you share with others who may be newly diagnosed with this condition?

A: Diagnosis can be freedom for those who have gone through life not knowing why they had such a difficult time connecting with the world around them. It should never be considered a label for pity and excuses, but rather a tool to help them learn more about themselves and apply those lessons for success. People with AS DO get married and they DO have children and they DO hold down successful jobs. Knowledge is the key along with a willingness to make some positive changes (this includes placing yourself in somewhat uncomfortable positions for the sake of learning to cope).


Q: What aspect of having this medical condition is most stressful?

A: The most stressful part, in my opinion, is feeling like I don't always connect with those around me. People are kind to me, and some consider themselves my friends, but few understand me to the core. I am fortunate that my husband, another with AS, and I can find comfort in each other's understanding at the end of the day.


Q: Do you have insurance that covers some of the expenses?

A: Yes, I have health insurance. I haven't had many related expenses as an adult. As a child, I was taken to many therapists to try and get to the bottom of things. Unfortunately, due to the lack of knowledge at the time, I was misdiagnosed with bipolar disorder and switched from anti-depressant to anti-depressant all through my adolescence. It was completely the wrong approach and further complicated an already difficult issue.


Q: Do you use any services provided by an agency supporting the condition, i.e. support groups?

A: As there is so much focus on children right now, and so much is still yet to be learned by the medical community about Autism and related "disorders", there isn't a large amount of resources aimed at individuals entering adulthood. I subscribe to a group called GRASP (http://www.grasp.org). They are doing much to raise awareness and clear up any misconceptions the media may have presented to the general population about who we are and what we're capable of accomplishing.


Q: What services would help to make your life less stressful?

A: I don't believe any exist beyond those I've mentioned.


Q: How can health care providers be more helpful?

A: Learn from your patients. Realize that the only reason Asperger's is labeled a "syndrome" is because our behaviors (resultant from sensory differences) deviate and grate against the social norm. Remember that what is the norm is only such because the majority set the standard. We are capable, intelligent people with multiple talents. When put in an environment that is sensitive to our sensory differences, we can accomplish things beyond our NT counterparts, although usually in a very concentrated area. Help your patients discover their passions and help them find their comfort zone to excel.

!

I know a number of people at work who are involved
in psychiatric aspects of occupational therapy. They probably
should know more about the traits and peculiarities of adults
living with Asperger's syndrome.

Not all of it will apply to the Canadian situation, or to OT practice.
However, this interview could prove useful.

How do I go about making a formal request for permission?
And I'll need to send a similar request to your interviewer, too:
Does that person have a name and address?

Yer quite the articulate young lady ! !

I did already let the interviewer know that I used the interview portion when first distributing this to GRASP. Since only the questions are hers, if she decides that she'd prefer not to have her name released, would my permission suffice? I'll speak with her in the mean time.

I didn't know just how much feedback this piece would bring, but all of it has been overwhelmingly positive. I really just wrote from the heart. If you feel that it's a worthy enough piece to distribute to OT psychologists, then I was successful in accomplishing what I had hoped to accomplish when I began to type the words into the form. One person at a time, I'm trying to change the way the world sees us. Many wouldn't think much of a 27 year-old woman with blue hair, unmodulated vocal tone, awkward gestures, who has a propensity to start rattling off encyclopedic knowledge when overhearing a random conversation of interest at first glance, but much like this essay, things people think they know about things like Asperger's are challenged when given a deeper look. Hopefully enough people will open up their eyes, but it takes a willingness to listen, the compassion to want to understand, and the wisdom to pass it on.

Thank you very much.

Unfortunately, it's only in the written word that I'm so articulate. I stammer a lot verbally, and have a hard time organizing my thoughts into coherent paragraphs. It's so much easier to slow down and see the words in front of me rather than try to spit them out as fast as they manifest in my mind.

This was really great. Do you have a blog? I'd love to add it to my reader.

Also, would it be too Aspie of me to suggest changing "natural" to "naturally" in a couple of places? Other than that I wouldn't change a thing.

Not at all! Thank you for noticing my small grammatical error. You know, I'm usually the person to pick on my friends about things like that...

I do have an LJ account, but I don't write in it anymore. Most of my internet time nowadays is spent on WP or on Fark.com reading the news and watching people flame each other. I've written some passionate posts in the Autism news article discussions from time to time. It's another way for me to continue the fight against intolerance and misinformation regarding the spectrum.

Since you seemed to enjoy this, and since I don't really have a blog, if I feel this level of inspiration again, maybe I'll write another essay and post it here.

You should definitely pursue writing if you enjoy it.

It seems to me you missed a chance to correct this person's thinking: Asperger's is neither a mental disorder or a medical condition. Just based on those assumptions, I would have refused to answer the questions.

I'm not trying to criticize you, but by agreeing to take part without pointing out the errors, you perpetuate them, even if unintentionally.

I can see your point, however I believe you have missed mine. In filling out this questionnaire, I have debunked the common preconceptions of Asperger's as a "mental disorder" by explaining it in such a way that it would no longer be able to be seen in such a negative way. It is probably why my co-worker's professor was so impressed. She presumably wouldn't have expected an essay like this, but rather one filled with language of self-pity, defensiveness and negativity, or something incoherently strange. In agreeing to fill out this questionnaire, I proved myself as an intelligent, adaptable and capable individual and not someone with a "mental disorder".

I didn't directly come out and say it by angrily refusing to participate, rather I rejected the picture of Asperger's as a mental disorder in the best way possible. Simply telling people it isn't one won't change their perception of us. Showing them does.

I was at the Philly GRASP meeting yesterday--small world!-- and actually thought you came across as articulate in your presentation, too. You and your husband were great speakers, so don't sell yourself short!

You seem to be a very wise person, GoddessofSnowandIce. Good luck with your self-advocacy efforts!

I'm also a part of the self-advocacy scene. In fact, I've given presentations and been on panels at numerous autism conventions including the National Autism Confrence in State College, PA.

Small world. Wrong Planet.

Thank you very much for your kind words. It was really nice getting to know everyone and being able to share our experiences for the greater benefit of the group. Sometimes I forget just how lucky we are to have had all of the right cards neatly stack themselves to our benefit. Eric and I share something so strong because we're committed to knowing ourselves, and not just for our marriage, but especially for our 2 children. We're honest, open, and as a result forgiving of each other's flaws. Really that's all any relationship needs to survive-- NT or otherwise. I suppose one could even go so far as to say it's not the AS that's holding us back from finding the happiness that is a loving, committed relationship. It's the dwindling population of human beings who have since lost the values of honesty, open-mindedness and commitment in favor of lies, selfishness and the superficial.

I hope to see you all again sometime soon, but it probably won't be every month as it'll be contingent on finding a sitter for a few hours.

Last edited by GoddessofSnowandIce on 14 Sep 2008, 10:39 pm, edited 2 times in total.

Thank you for your compliments.

I'd love to be more involved than I have been, but I guess until now I had no clue where to start. This interview seems to have stirred up a bit of unexpected positive response from both the professor at my co-worker's college and AS individuals online. I suppose it might have been the unforseen doorway into the "scene". I was very surprised when my husband and I recieved an invitation from the head of GRASP's Philly chapter to come and speak at the last meeting. I'd like to do more of this sort of thing, and since you seem to be a vet in self-advocacy, perhaps you could steer me in the right direction?

My ultimate goal is to someday meet Michael John Carley himself (getting that email response from him really made my day ). He's been a big inspiration who really has helped me see myself, and those closest to me, in such a refreshingly positive way. There are days when I feel so disconnected and strange, but generally speaking, I feel strong and confident in myself and all of my quirky oddness.

You know, it's funny, but I dated a guy I met through the group for quite a while. We used to come to meetings and leave together all the time, but I guess not too many picked up on it, judging by what Bob said about you guys being our first AS/AS couple. We're still good friends and he stopped by as the meeting was winding down to meet me for dinner afterwards and we had to laugh a little about it. I guess was an Aspies-not-picking-up-on-social-cues sort of thing.

I don't come to meetings as regularly as I used to myself because I live over an hour away. I am actually thinking about starting up another chapter to serve my region and will post about it on the listserv, if it comes to fruition. If it does, it would be great if you and Eric could make it sometime, although it would be decent drive for you. (I'm kind of thinking your town is on the Main Line, right? Well, if I don't even know where it is, it can't be too close by, anyhow).

Good luck with starting a new chapter! I hope everything comes together both for that and maybe rekindling a relationship with your friend.

Main Line? Nope. I live about 45 minutes from the Easttown Library. It's pretty much a straight shot up 202 N.