ask the autistic

[verte76]

I thought I'd jump on the bandwagon with this one. I have a form of autism called Asperger's Syndrome. Ask me anything about this condition, I'll answer from experience.

 

[Mr. Green Eyes]

How has it affected you, personally, and emotionally?

 

[Liesje]

Did things change for you after you were diagnosed? I have a step-cousin who had many problems for years. No one understood what was wrong or how to help. Once he was diagnosed as an Aspie, it was almost a relief. He was able to get better medication and proper treatment. Have you had a similar experience?

 

[I'm Ready]

is your condition similar to the boy in the book, "Curious Incident of the Dog and the Nighttime"?

 

[yolland]

How old were you when you were diagnosed, and had there been misdiagnoses prior to that?

What are some of the major disadvantages that having Asperger's creates for you personally? And some of the advantages?

 

[Greenlight]

One of my friends has an 8 year old boy with Aspergers. She's worried about his social skills, (or rather lack of them) as he finds it difficult to interact properly with other kids and communicate with them. Have you had these problems and if so how have you dealt with them? Has your condition changed or improved at all over the years?

 

[verte76]

My major problem is that I'm not good in social situations. I feel awkward around people, and I don't have much of a social life. I went for years with the wrong diagnosis. My child psychiatrist told me I was schizophrenic, then the doctors told me I had a personality disorder, and finally, when I was 46 years old, they told me I had Asperger's. It slowed me down in accomplishments in life. It took me twenty years to get a college degree! It's in history. People with Asperger's have intense interests; they tend to be obsessive. In fact, we even get treated with the same medication that an obsessive compulsive disorder patient gets.

 

[verte76]

How old were you when you were diagnosed, and had there been misdiagnoses prior to that?

What are some of the major disadvantages that having Asperger's creates for you personally? And some of the advantages?

It's slowed me down educationally. It took me twenty years to get a college degree. The advantage is that I'm focused on what I'm interested in and I really love history and actually enjoy studying. I also have a really high pain threshold, sometimes I don't need anaesthetic when I go to the dentist. Like I said in my last post, I was 46 when I was diagnosed, and there had been two misdiagnoses.

 

[verte76]

One of my friends has an 8 year old boy with Aspergers. She's worried about his social skills, (or rather lack of them) as he finds it difficult to interact properly with other kids and communicate with them. Have you had these problems and if so how have you dealt with them? Has your condition changed or improved at all over the years?

I have these problems. I've worked on them with a therapist, but there's only so much you can realistically improve. I'll always have a problem with lack of social skills.

 

[verte76]

is your condition similar to the boy in the book, "Curious Incident of the Dog and the Nighttime"?

Hm, I'm not familiar with this book. I'll have to check it out. For another famous portrayal of autisim, Dustin Hoffman was fantastic in "Rain Man".

 

[redhotswami]

you said it took you awhile to graduate college. do you think that is because of the condition or because of the lack of services and accomodations available to you?

sorry, i work in student affairs and services for students with disabilities is really important to me. i wanna know what other accomodations we can do to help support everyone.

 

[yolland]

I went for years with the wrong diagnosis. My child psychiatrist told me I was schizophrenic, then the doctors told me I had a personality disorder, and finally, when I was 46 years old, they told me I had Asperger's. It slowed me down in accomplishments in life.

I was afraid something like that might be the case...that seems to happen so often, and people your age especially, who grew up before widespread awareness of autism, often have such awful stories of inappropriate "treatments" in childhood. The school in the town I grew up in was too small and poor to have any Special Education programs, and the few unlucky kids I knew who needed them got bussed to a larger school a few towns away, where they were all lumped together in one classroom--autistics, kids with Down's Syndrome, kids with panic disorder, kids with sociopathic disorders, anything and everything basically--which couldn't possibly have been helpful for most of them. My own next-oldest brother has Tourette's, which wasn't diagnosed until adulthood either--fortunately, he had very patient teachers in our hometown school who recognized that he was very bright and were willing to be patient with his disruptiveness and distractedness, but both he and my parents went through a lot of grief hauling him to various counselors, who varyingly proclaimed him "psychotic", "emotionally disturbed", and various other diagnoses which did him no good at all. Today he works with disabled adults himself and is quite successful, but he still has anger management problems and needs medication and counseling.

What were your own pre-college experiences with school like?

Temple Grandin, who I share your admiration of, mentioned in one of her books that she has a high pain threshold, too--I can't remember the explanation for that, but I gather that's also characteristic of autistics. And it's wonderful that you've been able to put your heightened ability to focus to good use with your passion for history.

Do you find that being able to communicate with people in a more abstract context like the Internet helps transcend some of your social difficulties? I was wondering about that because it seems like then you wouldn't have to worry so much about things like reading body language, bothersome environmental distractions, etc.

Also--and this is kind of a delicate question, so no need to answer it if you don't want to--do you ever find it difficult to get other people to work with you socially in ways that help you interact more productively? I'm thinking for example of a couple students with Asperger's I've had who told me "Please just tell me flat-out if I'm not 'getting' something, or not interacting with other students appropriately," and I do my best to comply, but at the same time I'm often hesitant to be "flat-out" about such things for fear of hurting their feelings.

 

[VintagePunk]

Fascinating, Verte, thanks very much for posting, and thanks to everyone else for their thoughful questions. A friend of mine is doing his thesis on attentional attributes of autism, specifically having to do with the recognition of facial expressions, but along with the academic, hearing someone's personal experiences is invaluable.

 

[verte76]

Quite honestly, my pre-college school life was a nightmare. I didn't have access to special education when I went to the local elementary and junior high schools, and I really struggled. Having an absolutely psychotic teacher in sixth grade, who got committed shortly afterwards, certainly didn't help. I finally graduated from an experimental private school that let me work at my own pace and was non-directive. That was a good experience.

 

[phillyfan26]

What is the difference between your type of autism and those of others?

My cousin has a form (not sure which) that's probably a little more intense than that of yours, for he cannot attain a high school degree. He does have an excellent memory of certain things (going along with the obsessive thing - he knows a lot about all of us cousins even though he lives in the south and we see him rarely, and I think he know a load of info on NASCAR), and socially his only noticeable problem is that he stares at the floor as opposed to making eye contact.

 

[verte76]

What is the difference between your type of autism and those of others?

My cousin has a form (not sure which) that's probably a little more intense than that of yours, for he cannot attain a high school degree. He does have an excellent memory of certain things (going along with the obsessive thing - he knows a lot about all of us cousins even though he lives in the south and we see him rarely, and I think he know a load of info on NASCAR), and socially his only noticeable problem is that he stares at the floor as opposed to making eye contact.

Most autistics are more impaired than I am. Some, like your cousin, are learning-impaired. There are some autistics who can't read or write. Some have speech problems and talk very slowly. Some can't say anything.

 

[redhotswami]

Quite honestly, my pre-college school life was a nightmare. I didn't have access to special education when I went to the local elementary and junior high schools, and I really struggled. Having an absolutely psychotic teacher in sixth grade, who got committed shortly afterwards, certainly didn't help. I finally graduated from an experimental private school that let me work at my own pace and was non-directive. That was a good experience.

Can you elaborate more on the non-directive and setting your own pace? What were some of the guidlines you had to follow? Also, were there sorts of technologies, software, equipment, or other resources in particular you felt best accomodated you?

 

[randhail]

Do you think ABA therapy would've benefited you when you were younger?

Do you believe there is relationship between vaccines and the increase in autism? or do you think it's a matter of better diagnosing? I'm just curious to see what you think about this, given the attention that this issue has gotten.

 

[verte76]

Do you think ABA therapy would've benefited you when you were younger?

Do you believe there is relationship between vaccines and the increase in autism? or do you think it's a matter of better diagnosing? I'm just curious to see what you think about this, given the attention that this issue has gotten.

I'm not familiar with ABA therapy. As for the increase in autism, I think it's a matter of better diagnosing. There used to be this horrible theory of the cause of autism that was called "the refrigerator mother" theory. That was a mistaken notion that autism was caused by a cold mother. My own mother is proof positive that that theory is garbage. The first diagnostic stuff on Asperger's didn't come out until 1994. Since then they've gotten alot better with diagnostic stuff. About the vaccines, that's controversial. Some people think there's a connection, but I don't know, it's not how I got it. Autism is generally considered something you were born with, not aquired, but I'm not sure anyone knows for sure.

 

[verte76]

Do you find that being able to communicate with people in a more abstract context like the Internet helps transcend some of your social difficulties? I was wondering about that because it seems like then you wouldn't have to worry so much about things like reading body language, bothersome environmental distractions, etc.

Also--and this is kind of a delicate question, so no need to answer it if you don't want to--do you ever find it difficult to get other people to work with you socially in ways that help you interact more productively? I'm thinking for example of a couple students with Asperger's I've had who told me "Please just tell me flat-out if I'm not 'getting' something, or not interacting with other students appropriately," and I do my best to comply, but at the same time I'm often hesitant to be "flat-out" about such things for fear of hurting their feelings.

The Internet is a Godsend for me. It's made it much easier for me to communicate and have a social life. Autistics can't read body language. I'm no exception; I can't read body language. It's difficult to get people to work with me socially; the only people who really understand me are my family and my therapists. I've had some really bad experiences with petty jerks who didn't care how much they hurt me, they screwed me. If you're kind and show compassion, those Aspie students of yours will love you! It's true that it's easy to hurt an autistic's feelings. We're pretty touchy people. But it's worth a try, if we feel like someone is supportive of us, we do appreciate it.

 

[verte76]

you said it took you awhile to graduate college. do you think that is because of the condition or because of the lack of services and accomodations available to you?

sorry, i work in student affairs and services for students with disabilities is really important to me. i wanna know what other accomodations we can do to help support everyone.

It was my condition. That's always gotten in my way. I did have therapy in high school, so it's not like I didn't have any support.

 

[redhotswami]

It was my condition. That's always gotten in my way. I did have therapy in high school, so it's not like I didn't have any support.

thanks so much for answering our questions.

 

[Mr. Green Eyes]

I've had some really bad experiences with petty jerks who didn't care how much they hurt me, they screwed me.

I'm so sorry to hear that. Some people truly CAN be just pure cruel to people who are different. Just remember that you will always have friends here.

 

[verte76]

Can you elaborate more on the non-directive and setting your own pace? What were some of the guidlines you had to follow? Also, were there sorts of technologies, software, equipment, or other resources in particular you felt best accomodated you?

The school gave me two years to complete my high school work. I had made up two years at another school that was started to help kids with problems. Most were drug addicts, I was one of the few non-addicts in the program. After this I switched to the non-directive school. I could do as much or as little as I wanted as long as I got the work done in two years. This was before Windows existed, so I didn't have any special software or equipment. I sometimes wish I were a student now, I'd be better off getting this stuff at an earlier age.

 

[Greenlight]

I'm not familiar with ABA therapy. As for the increase in autism, I think it's a matter of better diagnosing. There used to be this horrible theory of the cause of autism that was called "the refrigerator mother" theory. That was a mistaken notion that autism was caused by a cold mother. My own mother is proof positive that that theory is garbage. The first diagnostic stuff on Asperger's didn't come out until 1994. Since then they've gotten alot better with diagnostic stuff. About the vaccines, that's controversial. Some people think there's a connection, but I don't know, it's not how I got it. Autism is generally considered something you were born with, not aquired, but I'm not sure anyone knows for sure.

Did you hear about this study which was on the news here the other week which suggests it may be due to faulty genes? http://news.bbc.co.uk/1/hi/health/6055176.stm
Thank you for answering all our questions. It does seems that health authorities are now much better at diagnosing the condition but you do wonder how many older people have it and still haven't been identified as such. Certainly in the UK, depending where you live it also seems to be a lottery as to how much support children and families with autistic members receive. Some authorities are apparently very good and there is a lot of provision made but in other areas it's still very shortcoming.

BTW I've also got a history degree and love the subject too I'd also really recommend the "Curious Incident of the Dog in the Nighttime" book. I think it started out as a book for teenagers but was in the bestsellers here for ages. It's written from the perspective of the autistic boy and it's quite funny as well as very moving.

 

[Utoo]

Do you believe there is relationship between vaccines and the increase in autism? or do you think it's a matter of better diagnosing? I'm just curious to see what you think about this, given the attention that this issue has gotten.

I'm a pediatric resident, so I'd like to throw in what I know on this.

Much of the controversy started with two papers indicating a possible correlation between the Measles-Mumps-Rubella vaccine and autism. What the study showed was that there was a higher rate of autism in children who had received this vaccine. The problem is that almost all children receive that vaccine, so the sample number of children who didn't is very small---a notorious statistcal problem. Worse yet, one of the studies only looked at 12 kids---instead of the hundreds or thousands usually used in major studies. Also, the studies didn't show that it actually caused autism, it just showed that two things happened in existence with each other. As an example, years ago there was a study that showed a correlation between drinking coffee and getting pancreatic cancer---people who drank coffee had a higher rate of pancreatic cancer. However, people who drink many cups of coffee a day are statistically also more likely to be smokers----and smoking is known to actually cause pancreatic cancer. So, coffee and pancreatic cancer have a relationship, but it's not a "cause & effect" relationship. Thus, the original study did not show that vaccines cause autism; it only raised the possibility.

Since that study, there have been hundreds of studies looking at autism and vaccines. The vast majority of those studies (and nearly all of those that were done with proper statistical processes) have not shown a true relationship between vaccines and autism. (One study was from Denmark and looked at every child born between 1991 and 1998-----yay, U2Man! ) In light of these findings, 10 or the 13 authors of the original study have since published a retraction of their statements from the original article.

One reason why no one hears an official word from some medical organization that vaccines absolutely do not cause autism is due to the scientific method. With the use of a "null hypothesis," one cannot say that somethin NEVER, EVER causes something else. So, even though multiple studies indicate that there is not causal relationship, you cannot say that it NEVER happens----there is always the potential for something that has not been described or witnessed in a scientific study. The likelihood, however, is very small.

One thing that many people have looked at as a possible cause in vaccines is "thiomersal." This is a mercury-based buffer compound that was added into many vaccines as a preservative. In high concentrations, mercury has been shown to cause damage to brain tissue. The levels used in those studies, however, were extraordinarily high. The amounts used in vaccines were miniscule. Studies of thiomersal-based vaccines showed no relationship with autism. However, because of the controversy about the compound, thiomersal is no longer used as an additive in all but one of the vaccines, and that vaccine is one that is given to teens & not infants.

One other reason why some people tend to make an association between autism and vaccines is that many children who are diagnosed with autism are diagnosed not too long after getting a vaccine. The problem with this is that the age at which autism is usually diagnosed---in the second year of life----is at a time when a child is getting dozens of vaccines every few months. The current vaccination schedule in the United States has a child getting a shot at 2 months of life, 4 months, of life, 6 months, 12 months, 15 months of life, 18 months, and 24 months. So it's no wonder that a child who's diagnosed as autistic at 19 months recently got a vaccine---he's gotten dozens in the last few months. That doesn't necessarily mean that a vaccine caused it, just because it was around the same time. The fact of the matter is that autism can only be diagnosed at an age when the social skills that are lacking autism are supposed to develop---in the second year. You look for social skills to develop, and when they don't, you think of autism; you have to wait until the second year for those skills to potentially develop. It happens (unfortunately) that this is the same exact time that kids get dozens of shots, making a temporal association arise.

A few possible explanations as to why autism seems to be on the rise are based mainly on the fact that we have become more proficient at diagnosing it. Like verte, many people with various forms of autistic spectrum disorders (as they're officially known) were never diagnosed as children. While many parents of newly-diagnosed children may not know of anyone in their family who has a spectrum disorder, many of the families will have a "weird Uncle Harold" somewhere in their family tree-----who likely wasn't diagnosed as autistic back in 1903, etc. It isn't believed that autism is necessarily occurring in more people now---it's just that we are now better at recognizing it.

And, as Verte has said....despite all of these studies, no one knows for sure how autism comes about.

I'm sorry that this is so long-winded! It just pains me when parents don't vaccinate their kids against potentially fatal diseases because of this undeserved-controversy. We have seen unvaccinated kids in my hospital die from Pertussis---something that no kid should die from. What really hurts is when parents tell me to my face that they don't believe me and that I'm lying. It has happened! What I tell them--and what I hope they understand---is that I love kids I have trained for the last 9 years of my life to take care of children and to help them be healthy and enjoy life. If something came along that truly showed that some medical practice hurt children, I would be 100% for stopping it. I don't want to hurt kids---I haven't spent hours studying and working to promote some government or pharmaceutical conspiracy. I just want kids to be healthy. Vaccines are a giant leap toward keeping kids healthy.

If anyone is interested, I can email an article that reviews 77 prior studies about autism and vaccines.

 

[randhail]

If anyone is interested, I can email an article that reviews 77 prior studies about autism and vaccines.

I wouldn't mind taking a look at the article. I'm taking a biostats course as a first year med student right now so I know all about the wonderful world of null hypotheses


Off topic, but are you doing peds on it's own or are you going to subspecialize?

 

[DILETTANTE]

Verte76 -- thanks for answering our questions. I think that it's very generous -- and brave of you!
Could you say a bit more about your inability to "read body language"? Is it that you don't notice things like voice inflections and social distance and facial expressions -- or that you notice them, but they're not socially meaningful...or something else? Do you feel that someone can be taught to read body language?

 

[Utoo]

I wouldn't mind taking a look at the article. I'm taking a biostats course as a first year med student right now so I know all about the wonderful world of null hypotheses


Off topic, but are you doing peds on it's own or are you going to subspecialize?

I sent the article to you. Hopefully it all fit in the interference "email randhail" box!

I'm planning on just doing general peds. I love the idea of seeing kids grow up--from birth to 18-19 years!

 

[sue4u2]

I sometimes wish I were a student now, I'd be better off getting this stuff at an earlier age.

This is true on so many levels. lol

Maybe being an educator is more your forte now. You're really good at describing this on a level someone can understand.
Thanks for sharing.