Autism Profiles - Kathleen Vanderhoofven
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Kathleen Vanderhoofven is a member of the Missouri Autism Advisory Committee and served as a member of the 2000 National Autism Symposium.
Q. When were you diagnosed with Autism or Aspergers?
A. I was diagnosed with Asperger syndrome in 1997, at age 34.
Q. If you were diagnosed in childhood, what was it like growing up with Autism/Aspergers?
A. I was not diagnosed in childhood (Asperger syndrome was not even recognized back then), but I still grew up with it, of course. It seems equally important to tell what it was like growing up with *undiagnosed* Asperger syndrome. I was considered to be extremely "shy," and I was unable to speak to others in many situations. I started developing tics in early childhood, and I was markedly obsessive-compulsive. Lots of things went "over my head." I could not understand classmates' jokes, and I was frequently called "naive" and "innocent." I was nice to everyone and could not understand how classmates could deliberately hurt others through their teasing and bullying. I related much more easily with adults than with other children. I was aware that there was something "wrong," but I had no idea what it was. The worst thing was that others tried to reassure me that nothing was wrong with me, but this only convinced me that I then must have been incompetent, since I consistently fell short of others' expectations, and none of my attempts to remedy that were successful.
Q. What would you like people to know about Autism/Aspergers?
A. I would like people to know probably too many things to include here, but here are some of the more important ones. Autism arises from neurologic differences in the brain. It is *not* a mental illness, nor is it a personality disorder. There are real differences in how a person with autism or Asperger syndrome perceives and interacts with the world. Also, it is important to realize that autism *is* a spectrum disorder, meaning that not all of us are severely affected. However, "high-functioning" autism (HFA) and Asperger syndrome (AS) are still quite disabling, and this is compounded by problems such as others' expectations being based on assumptions that our minds work the same way theirs do. Also, autism is an "invisible" disability, particularly in the case of AS and HFA, and particularly in adults. We seem "different" to others, but many people do not understand that our "differences" are much more complex and pervasive than just simple idiosyncrasies. A common experience, and one with which I am personally very familiar, is that people who do not understand autism often minimize the problems of adults on the autism spectrum because we do not fit into their mental image of autism, so it seems to be easier for them to just disregard the diagnosis altogether. It also seems to be easier for many people to accept an HFA/AS diagnosis in a child than in an adult. Relatively speaking, there is a lot of help available for children with HFA/AS, but adults with HFA/AS, for the most part, have a lot of trouble finding help for difficulties which arise from the autism.
Q. What can you tell me about your school days?
A. From the start, I did very well academically and was consistently top-of-the-class in such subjects as reading, spelling, science, and math. However, about third grade I began to frequently get in trouble for not staying on task (e.g. reading when the teacher was talking, etc.). In fourth and fifth grades, I would spend every recess just sitting or wandering around by myself, sometimes collecting flowers or fall leaves to take to the teacher. Around the same time, I became aware that several classmates did not like me and would pick on me. This intensified over the next five years, with almost all classmates either ignoring me or making fun of me. Only a few classmates were nice to me, and my best friends were the teachers. I especially disliked physical education, and I particularly had difficulty with team sports, which provided many more opportunities for classmates to make fun of me. By eleventh and twelfth grades, classmates were more mature, but by then the damage had been done, and I was in a serious depression from which it took several years to recover.
Q. What types of supports were needed versus what was received when you were in school?
A. First and foremost, schools should adopt a no-tolerance policy regarding students making fun of and picking on other students. Teaching students to respect others would have much more far-reaching effects in society than just helping students with disabilities. Second, teachers (or aides) should make ongoing efforts to identify specific difficulties the child is having and then give individualized instructions regarding, for example, appropriate ways to start a conversation, or how to proceed with an assignment that the child seems confused about (we do not always "get it" the first time something is explained). Third, students should be permitted to choose alternate physical education classes that do not include team sports. (In discussions with other individuals with HFA/AS, there has been much agreement on this last point.)
Q. How can local communities be more supportive of people with autism/aspergers?
A. I think that awareness is the key to community support for any disability; however, public awareness of autism is mostly limited to autism in children. While awareness of autism in children is important, it is equally important for the public to become aware of the effects of autism in adults. It would be helpful if college instructors, employers, physicians, counselors, law enforcement officers, etc., became aware of the unique problems and abilities of adults with HFA/AS. For example, employers should place less emphasis on social skills, "teamwork," "enthusiasm," etc., if the presence or absence of those characteristics in a person does not directly affect his/her ability to do the job itself.
From my own experience, employers appreciated my knowledge and attention to details, but my social difficulties, as well as my inability to work quickly, were often noticed more than the quality of my work. If efforts are made to accommodate the work style of people with HFA/AS, then people with HFA/AS can be very good workers.
Q. How has Autism/Aspergers impacted serious relationships with others?
A. All my life, I have had trouble making and keeping friends. To be honest, I am not even sure what "real friendship" is, but I have been aware for years that most of my "friendships" have been one-sided; that is, I sought out the company of others, but most of the people whom I thought were friends rarely sought my company, although they got together with other people all the time. I knew most of them because we went to the same school or the same church, and they were nice to me but that's about all.
I hated myself for years because it was logical that if everyone had friends but me that there must be something wrong with me, but I had no idea what it was. However, now I have good friends on the Internet who have HFA/AS, and I also have a couple of "real life" friends who have disabilities, although I see them very infrequently, and I now have one "real life" friend who has HFA who lives near me.
I will also mention that my husband and I have been married for 14 1/2 years. For 11 1/2 years, we had severe communication problems, which often led to arguments. When we found out about Asperger syndrome 3 years ago, my differences suddenly made sense to my husband. Then I read that communication is some ridiculously high percentage nonverbal, so I asked my husband for his opinion on how much of communication is nonverbal, and his guess came pretty close to what I had read. What a revelation!! For me, if something is not said or written, it is not communicated. Since that realization, our relationship has improved 1000%, since now he knows not to put too much importance on my "tone of voice," etc. Our relationship is quite different from others, I am sure, but we are doing quite well.
My husband and I have two children. Our son has Asperger syndrome, and our daughter does not. I understand my son *very* well, and I instinctively know how to handle any problems that arise with him, so I do have an advantage there.
Q. What types of things have been beneficial in helping people understand you?
A. Knowledge, acceptance, respect, and an open mind can go a long way in understanding others. The people who understand me best are the ones who have educated themselves about autism. Among those who do not have much knowledge of autism, the ones with whom I get along well are the ones who realize that they do not fully understand my differences, and they do not criticize or judge me for being different. For example, I sometimes get "overloaded" from too much sensory input. Those who try to understand me will permit me to withdraw to a quiet place to recover, rather than expecting me to continue participating in whatever situation it was that "overloaded" me in the first place (such as a family reunion). Another example: I am very prone to "inertia" (difficulty in starting or stopping an activity or changing from one activity to another). Instead of making accusations of being "stubborn," "difficult," "lazy," etc., it is much more helpful for others to realize that this problem is often just as frustrating to the person with HFA/AS as it is to the family member, employer, etc., and try to work out ways to help the autistic person deal with this.
Q. What suggestions do you have for families and friends of persons with Autism/Aspergers?
A. First, read everything you can about Asperger syndrome and autism! The more you read, the more you will understand. Then talk with the person with HFA/AS, and find out how his/her issues relate to what you have read. Get involved in a support group, either online or in "real life." Educating oneself about autism is absolutely the best way to understand why a person with HFA/AS is the way he/she is, what his/her skills and limitations are, and what he/she needs in order to function, fit in, etc.
Q. Is there a particular resource that you find to be helpful and that you would recommend to others?
A. The Internet! There is a lot of information about autism and Asperger syndrome on the Internet. Even more helpful are the e-mail lists, message forums, and Internet Relay Chat channels! Here are a few of my favorite web sites. There are many others, but you can get to most of them through the ones listed below: Ooops... Wrong Planet! Syndrome
http://www.isn.net/~jypsy/
Autism Resources:
http://www.autism-resources.com/
Online Asperger Syndrome Information & Support (O.A.S.I.S.)
http://www.udel.edu/bkirby/asperger/
Dr. Tony Attwood - Asperger syndrome:
http://www.tonyattwood.com/
One of the very best books I've read about Asperger syndrome is Asperger's Syndrome: A Guide for Parents and Professionals , by Tony Attwood. (Jessica Kingsley Publishers, 1998; ISBN 185302 577 1)
