An interview with a highly succesful Aspergers Adult

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WOW!! Thank you so much for this long and wonderful insight. No apologies needed. I am honored that you took the time to help me understand,.

The thing is that I am being asked to do interviews and provide insight for others and I feel like I am an exception (as you guys so rightly point out) and as such am NOT the best voice for ASD issues overall. But, of course, since I hit success despite my ASD, I am being asked to articulate what it is that makes me different. I think there is benefit to this so have agreed but I cannot articulate this without understanding the other side and trying to compare from that starting point. The "giftedness" label makes it all just that much harder to understand.. My pyschologist keeps saying to me, "You are really, really (or super) smart" when I ask him why I have managed to avoid under-employment. He stresses to me that my ASD issues are masking my true potential and that I might be in even a better place without them. It is fascinatingto hear these other perspectives.

WOW!! Thank you so much for this long and wonderful insight. No apologies needed. I am honored that you took the time to help me understand,.

The thing is that I am being asked to do interviews and provide insight for others and I feel like I am an exception (as you guys so rightly point out) and as such am NOT the best voice for ASD issues overall. But, of course, since I hit success despite my ASD, I am being asked to articulate what it is that makes me different. I think there is benefit to this so have agreed but I cannot articulate this without understanding the other side and trying to compare from that starting point. The "giftedness" label makes it all just that much harder to understand.. My pyschologist keeps saying to me, "You are really, really (or super) smart" when I ask him why I have managed to avoid under-employment. He stresses to me that my ASD issues are masking my true potential and that I might be in even a better place without them. It is fascinatingto hear these other perspectives.

Thanks for posting your interview, Karla. You have accomplished some impressive things.
I am the mother of a 5 yr old with an ASD. He was diagnosed at the age of 2.5 and we knew something was going on from about 1 yr of age.

You mentioned that your mom said you were an odd child. Do you recall anything about your childhood that would have indicated AS as a child? I am wondering about whether it is beneficial to tell a child about their diagnosis at a young age. Many parents feel that the child should be told right away, but I am wondering if the child will start to use it as a crutch or an excuse to get away with certain things.

Anything you can share is appreciated.

I have been pondering those questions lately myself. I earn a good living as an electrical engineer. Now my son, who is only seven right now, is also diagnosed with AS. So I am trying to figure out what I did so I can lead him down the same path. I do have a giftedness when it comes to math, numbers, patterns, etc.. (not at a savant level by any means though) However, giftedness by itself can't be the answer, as many have already attested too.

On the other side are many people who were left to the sink or swim approach, and sank. Homelessness, prostitution, starvation, etc.

I hope any of that was helpful and not just me yammering at myself.

I still haven't figured out how I didn't end up going down this road. All it would have taken is a little turn to the left or right at certain points in my life.

Please. Don't stop "yammering".

What kind of support network did you have? That's one element that seems to get elided in conversations like this.

Funny you should say that. I've also considered that there's broadly two types of Autistic people.

Autism principally impedes people in two ways: immaturity and social skills (I'm using the word immaturity in its most familiar sense, i.e. the ability to function as successfully as one would be expected to given one's biological age, rather than your psychologists's definition). The two Types are determined by whether an individual is most impeded by poor social skills or immaturity:

The first type of Autistic person is relatively mature and independent for his/her age, but is very introverted and has very poor social skills. These individuals - regardless of gender - also have a masculine temperament. Men who fit into this category are typically classic computer nerds with good jobs in IT, but are very unsuccesful with women, and have few friends (except perhaps a few other nerds). Women who fit into this category tend to be tomboyish (possibly gay), are unsuccessful with men (if they're straight), but often have a fairly successful career in a male dominated profession. Temple Grandin (and you maybe?) fall into this category.

The second type of Autistic person is somewhat extroverted and creative, and doesn't struggle with the social awkwardness that plights Type 1. However, he/she is extremely immature for their age, and struggles in any aspect of life that necessitates maturity - careers, independence, etc. These individuals - regardless of gender - have more of a feminine temperament. Women who fit into this category are almost always straight, and are often saved by a 'knight in shining armour', i.e. a NT man. However, men who fit into this category are often confused about their sexuality (though they're usually more metrosexual than gay), and struggle enormously in their lives (as men aren't allowed to be 'damsels in distress') until, at some point, they finally stop being Peter Pan and grow up. I would definitely put myself in this category (I'm not gay or effeminate, but I'm not macho either - certainly not compared to American men!).

During talks with hundreds of parents and reading in scientific literature I have divided Autism diagnosis into two broad categories:

1) Kanner/Asperger Types (named after the doctors who discovered Autism) (Kanner 1943 and Asperger 1944) and
2) the Epileptic/Regressive Types. Fragile X syndrome, Retts Syndrome, known fetal damage and damage due to high fevers are not included.
 
Both types probably have a strong genetic basis. Talks with parents indicate that they both have the same family history profile (Grandin 1992a). An interview with Margaret Bauman indicated that both types have the same pattern of brain abnormalities (Bauman 1991, and Bauman and Kemper 1994). During her autopsy studies, she examined both types. Possibly the different clinical symptoms between the two types can be explained in subtle variations of brain abnormality within the larger framework of a basic abnormality in the limbic system, hippocampus, amygdala, and cerebellum.
 
Kanner/Asperger type

Asperger's Syndrome is probably a milder type of traditional Kanner type high- functioning Autism. People with Asperger's syndrome can often function better in the community and have more normal speech and thinking patterns. Research by Bowler (et al. 1992) at the University of London indicates that they can solve a simple "Theory of Mind" problem that traditional high-functioning autistics fail. An example of Theory of Mind problem is: "Peter thinks that Jane thinks etc." Both the Kanner and Asperger types have deficits in flexible problem solving, facial recognition, and fine motor speed coordination. Testing at the University of Denver by Ozonoff (et al. 1991) indicates that both types do poorly on the Wisconsin Card Sorting Test which is a test of flexible problem solving. Most people with Autism are visual thinkers, but there are some people with Asperger's syndrome who are good with numbers and have poor visual skills.
 
Kanner/Asperger types can range from individuals with rigid thinking patterns and a relatively calm temperament to people with more normal thinking patterns with lots of anxiety and sensory sensitivity problems. Many of the individuals have flat affect. Charlie Hart's (1989) excellent book, Without Reason, describes examples of the first type and my book, Thinking in Pictures(1995), and Annabelle Stehli's (1991) book, Sound of a Miracle, describes the second type.

[...]
 
Regressive/Epileptic Type

These individuals often have more obvious neurological problems, and their ability to understand speech is often poor. Even though they may pass a standard pure tone hearing test, they may not be able to hear complex speech sounds. Some of them cannot follow a simple command like "put the book on your head." Volkmar and Cohen (1989) were the first researchers to identify the regressive or "late onset" form of Autism. Many of these children have signs of subtle epileptic seizure activity, such as staring and "spacing out." Some of these individuals may have sensory jumbling and mixing; whereas Kanner/Asperger Types have good receptive speech and can understand what people are saying. Regressives may just hear a jumble of noise. Sands and Ratey (1986) describe this as the concept of noise. Allen and Rapin 1993) state that children with autistic behavior that are totally mute, with no receptive speech, have to be introduced to language through the visual modality. Some of these children may learn to speak when they are taught to read.
 
Many regressive/epileptic children are labeled low functioning and have low IQ scores. Some may be ret*d, but others may receive a low-functioning label because their sensory processing problems make communication difficult. 

[...]

Serious behavior problems sometimes occur at puberty and autistic teenagers and adults may have severe rage or aggression. 

[...]
 
Outbursts of aggression in autistic teenagers and adults are sometimes caused by frontal or temporal lobe seizures. These seizures (epileptic episodes) are often difficult to detect on an EEG (Gedye 1989, 1991). Seizures should be suspected if the rages occur totally at random. Most other types of aggression or rage are usually triggered by some event such as frustration with communication, painful sensory stimuli or an unexpected change in routine.

[...]

EDUCATIONAL STRATEGIES AND SUBTYPES

A teaching and therapy program that worked well for me may be painful and confusing to some nonverbal lower functioning, regressive/epileptic people with Autism. My speech therapist forced me to look at her. I needed to be jerked out of my autistic world and kept engaged. Some children with more severe sensory problems may withdraw further because the intrusion completely overloads their immature nervous system. They will often respond best to gentler teaching methods such as whispering softly to the child in a room free of florescent lights and visual distractions. Donna Williams (1994) explained that forced eye contact caused her brain to shut down. She states when people spoke to her, "their words become a mumble jumble, their voices a pattern of sounds" (Painter 1992). She can use only one sensory channel at a time. If Donna is listening to somebody talk, she is unable to perceive a cat jumping up on her lap. If she attends to the cat, then speech perception is blocked. She realized a black thing was on her lap, but she did not recognize it as a cat until she stopped listening to her friend talk.
 
She explained that if she listens to the intonation of speech, she can't hear the words. Only one aspect of incoming input can be attended to at a time. If she is distracted by the visual input of somebody looking in her face, she can't hear them. Other people with Autism have explained that they had a difficult time determining that speech was used for communication. Kins, a man with Autism, further explained that if somebody looked him in the eye, "My mind went blank and thoughts stop; it was like a twilight state." Cesaroni and Garber (1991) also describe confusing and mixing of sensory channels. Jim, a man with Autism, explained, "Sometimes the channels get confused, as when sounds came through as color." He also said that touching the lower part of his face caused a sound- like sensation. Donna told me that she sometimes has difficulty determining where her body boundary is.
 
Cesaroni and Garber (1991) also noted problems with locating a tactile stimulus. The tendency of some autistic people to constantly touch themselves and objects around them may be an attempt to stabilize body and environmental boundaries. Therese Joliffe, an autistic woman, explained that it was easier to learn by touch because touch was her most accurate sense (Joliffe et al. 1992). Donna told me that sensory integration treatment, consisting of rubbing her skin with brushes, has helped. Even though she disliked the tactile input from the brushes, she reported that it helped her different sensory systems to work together and become more integrated. Her sensory processing also becomes more normal when she is relaxed and is focusing on only one sensory channel. Donna may be half way along the continuum between the Kanner/Asperger Type and the Regressive Epileptic Type.
 
PATTERNS OF NEUROLOGICAL ABNORMALITIES

Both Kanner/Asperger Types and the Regressive/Epileptic Types have abnormalities of the cerebellum (Bauman 1991, Bauman and Kemper 1994). Cerebellar abnormalities may explain the sound and touch sensitivity problems observed in most forms of Autism. Research on rats indicates that the vermis of the cerebellum modulates sensory input (Crispino and Bullock 1984). Stimulation of the cerebellum with an electrode will make a cat hypersensitive to both sound and touch (Chambers 1947). The cerebellum may act as a volume control for hearing, vision, and touch. Courchesne et al. (1988) found that many high-functioning Kanner/Asperger autistic people have abnormalities of the cerebellar vermis. Kanner/Asperger Types may also have a smaller than normal cerebellum. MRI scans of my own brain indicated my cerebellum is 20 percent smaller than normal; and an autistic computer genius with ultra classical Kanner Type Autism has a cerebellum that is 30 percent smaller than normal.
 
As discussed previously, the more severely impaired Regressive/Epileptic Type autistic people have much greater sensory processing problems. Most Kanner/Asperger Types do not experience sensory jumbling, and they can attend to simultaneous visual and auditory input. In more severe cases, such as Williams (1993) and Cesaroni and Garber (1991), sensations from the eyes and ears can mix together. Individuals with Autism process information very slowly, and they must be given time to respond. Nonverbal adults will process sensory input more slowly than verbal adults. Some individuals with very severe sensory processing problems may take several hours to recover after experiencing sensory overload. Gillingham (1995) contains an excellent review of autistic sensory problems. Parents often ask, ‘how can I tell how severe my child’s sensory problems are?’
 
Children and adults that have tantrums every time they go in a large supermarket or shopping mall usually have severe sensory processing problems. Children and adults who enjoy shopping in big stores usually have less severe sensory problems. The degree of sensory processing problems will vary greatly from case to case. It can vary from mild sound sensitivity to sensory jumbling and mixing. Lewis (1993) describes her son who may be mid-way between Kanner Type and Regressive/Epileptic Type. He does not have the rigid thinking of a typical Kanner Type, and he understands the give and take of conversations. However, he has signs of serious sensory processing problems, because he does self-stimulatory behaviors in nearly every sensory modality. Possibly, this may be due to brain stem abnormalities in addition to the cerebellar abnormalities. Hashimoto et al. (1992) found that low-functioning autistic people with low IQ scores had smaller brain stems. McClelland et al. (1992) also found that low-functioning individuals were more likely to have abnormal results on a central conduction time test, which is a measure of brain stem function.
 
McClelland et al. (1992) believe that autistic people have a defect in myelinization. This would account for the frequent occurrence of epilepsy and abnormal brain stem- evoked potentials in older autistic children. Myelin forms the fatty sheaths around neurons. It is like insulation on electrical wires. The lack of myelinization may also account for the mixing of sensory input from the eyes and ears and mind blank outs that occur when an autistic person becomes excited. The "space out" and jumbling may be due to miniature epileptic seizures that occur between the poorly myelinated neurons. Jim, one of the autistic people that Cesaroni and Garber (1991) interviewed, theorizes that certain frightening sounds can act as a trigger for disorganization of processing, similar to epileptic seizures that a flashing light can trigger.

That sounds like an awful, oversimplified way of categorizing autistics.