Unusually Good Asthma Doctor

A little while ago, I went to get a new prescription for my asthma medication. While I was talking to the doctor about my prescription, I asked her about how to make sure to take my medication regularly, something I've had doctors get mad at me for not doing even though it's executive dysfunction that makes me go off my medication and I really can't help it (I thought I'd blogged about that before, but all I could find was this).
She didn't give me any advice on that (which is too bad because I have the same problem with antibiotics) but instead she told me that I actually don't need to stay on my asthma medication if I have no symptoms. I thought the daily puffer (Flovent) was a preventative and the one I take during an actual asthma attack (Salbutamol) was a fast-acting symptom relief one. Which is technically true, but it turns out they actually do different things, whereas I thought they did the same thing over different time ranges. Flovent apparently reduces swelling, while Salbutamol stops spasms. Anyway, it turns out if I'm off both medications and breathing just fine, I don't need to take them - even the Flovent - but if I'm having to take the Salbutamol (and therefore, clearly having symptoms) I also need daily Flovent. So my instinct that I kept fighting against to only take my medications when I feel sick is actually right in this case.
What I really like about this doctor is that, unlike every other doctor I've seen for pretty much any physical problem, she treated me like a knowledgable person, who not only needs to know what to do but also needs to know why. Exactly how I'd treat a patient if I became a doctor. I love being treated like I'm capable of understanding things.

Digby Tantam's Reply

I emailed Didgy Tantam awhile ago with a reply to his article Malice and Asperger Syndrome. I've now received the following reply:

"Dear Ettina
Thank you for your interesting observations. It is possible that you do not meet the criteria that Elizabeth Newson used.
Best wishes
Digby Tantam"

That's all? Just 'you might not have PDA'?

Email to Digby Tantam About Demand Avoidance

I just emailed the following reply to the article Malice and Asperger Syndrome:

"I am a 19 year old autistic person officially diagnosed with PDD NOS and self-diagnosed with Pathological Demand Avoidance (technically, it was my mom who said I had it - I wasn't sure).
I've read your article Malice and Asperger Syndrome, and I don't think that is an accurate explanation of PDA. It sounds to me like you are probably describing a different condition instead.
I am not at all like Alice, Richard, Hugo, Tricia, Amanda, Felicity or the boy who lied to his aunt about his uncle's death. As for your list of TFAS traits:
* lacking obvious eccentricity and clumsiness - I am slightly clumsy and can fake neurotypical in one-on-one interaction reasonably well, so I fit that.
* seeming immature - I'm not sure how I seem. I am delayed in self care skills and have separation anxiety, which probably make me seen immature, but I am intensely interested in psychology and medicine and can talk at the same level as a professor in those areas, which probably makes me seem mature. I think I tend to look younger than I am because I don't wear makeup or revealing clothes (both due to tactile sensitivity and lack of interest in appealing to men). I don't tend to ask personal questions of other people or ask to hold their things. I do ask to hold babies or small carryable animals, but many people do so and I have the usual preliminary compliments and questions.
* conceiling disability - I do try to pass for normal sometimes to avoid bad reactions, but not to the extreme you describe. In fact, I'm quite open about being disabled and will often disclose my autism to strangers!
* lack of special interest - as mentioned above, I'm fascinated by syndromes. I'm also intensely interested in fantasy, particularly vampires, werewolves and other human-like mythical creatures.
* long periods of inactivity - I am physically quite inactive, but almost always reading something, writing something, etc. Even when I'm doing nothing, I'm thinking and fantasizing. Watching me, I doubt someone would get the impression that I'm inactive in any area other than physical exercise.
* repetitive activity is concealed around strangers - I do hide my stims around strangers because I've been bullied a lot. If I trust them to be accepting, I won't hide my stims. If I were seeing a psychologist, I would probably stim openly in front of them, because it's their job to be accepting of that.
* flying into a rage - this is where the accuracy of the description of PDA for me becomes clear. The vast majority of my meltdowns are because someone is trying to force me to do something and I get scared and stuck in resisting. For example, I'll be getting ready to leave the house in the morning, and my father is getting anxious about time and yells at me to hurry, at which point I get upset and stop getting ready - instead, I interfere with the others getting ready because my father often threatens to leave me behind. We have a long commute every day so there's no way I could make my own way in, and my separation anxiety is worse when I'm upset. And although I'm acting angry, what I am feeling is terror. I only rarely hit people, and never break things. Usually I just yell that they hate me, etc. This is not a voluntary thing - I feel compelled to do that, because I am scared.
* socially distressing acts initiatiated 'out of the blue' - the only time I ever act that way is when an earlier problem was not sufficiently resolved and I'm still upset about it (but more often in those cases I don't stop acting upset in the first place). In all other cases, there is a clear trigger, which is always either someone else overloading me (by humming, grabbing, etc) and refusing to stop, demands on me given in angry tone or demands I find unfair, or some other perceived attack (eg my parents saying hurtful things about me, or someone lying to me and persisting in the lie when I point it out, etc)
* poor nonverbal interpretation, poor scores on emotion-matching tests - I have much milder social problems than that. I do fine on emotion-matching tests and am pretty good at reading people's emotions 1:1. But I don't understand social hierarchies and self-made groups, such as who is friends with who, who is popular, etc. I also tend to misinterpret frustration, etc as anger at me, which would not show up in a test because I only react that way in real interactions - a photo of a person can't possibly be a threat to me.
* trying to wind people up because they are easier to read - this is very much not true for me! I am terrified when others are mad at me, and very upset when others are sad around me. It would make no sense for me to deliberately induce such an unpleasant situation. If I'm scared because I don't know how someone is feeling, I withdraw and try not to be noticed. I don't try to provoke them to attack me or induce sympathetic anguish in me by being upset! I only upset others when I have no choice, because I feel endangered by what they are doing to me or making me do. Even then, I try to fight them off without upsetting them too much. I tend to be passive-aggressive because of this."

Letter to Tony Attwood About Cassandra Syndrome

Here is a letter I just sent to Tony Attwood:

"I have read that on October 22-23, 2008, you will be speaking at a conference about marital relationships and Asperger Syndrome, including a discussion about 'Cassandra Affective Deprivation Disorder'. The inclusion of NT spouses of AS individuals, but no married AS individuals, on the panel is especially problematic.
I hope you will make it clear that marital problems are not solely the fault of one person simply because they have a neurodevelopmental disability, and that intolerance, failure to understand and failure to accomodate differences on the part of the neurotypical spouse is a big source of problems as well.
Except in cases of spousal abuse, marital problems are always the 'fault' of both partners. Asperger Syndrome causes social differences and other differences, but unless the AS partner has co-morbid abusive tendencies (which are probably equally common in AS and NT people), the AS diagnosis does not mean they are at fault for the marriage breakdown. There are many AS/AS marriages which do just as well as NT/NT marriages. The problems that AS/NT marriages can have (which are not universal or insurmountable) are that the two partners have a very different way of relating. This is no more the fault of one partner as opposed to the other than a communication breakdown between two monolingual people who speak different languages. They simply do not understand each other.
Due to negative experiences, AS partners may be more likely to be very sensitive to criticism and have low self-esteem, but NT partners are more likely to be prejudiced against their partner's cognitive style and be less able to compensate for neurological differences (AS individuals have a lifetime of practice).
For an NT/AS marriage to work, both partners must work to understand and accept each other, as well as ask assertively for what they need in the relationship. Blaming relationship problems solely on one partner, as the Cassandra Syndrome concept does, will not help that. Very often, the AS person is already exerting much more effort to accomodate their NT partner than vice versa."

Kanner autism

I hate how so many people misrepresent Leo Kanner's view of autism. They do it with Asperger's article, too, but at least they have the excuse that it's in another language (since the ones I know about are all English speakers). So I'm going to debunk several such claims.

"(The prevalence of classic Kanner autism, which is associated with moderate mental retardation, has not increased over the years.)"
http://books.google.ca/books?id=teMnqLotDm0C&pg=PA514&lpg=PA514&dq=Kanner+autism&source=web&ots=ra4jEJTOMr&sig=zNkdyNXmoZSF_fFIlw_e_vDivzw&hl=en

"Asperger, unlike Kanner, included people who had average to high IQs in his definition"
http://www.cbc.ca/news/background/autism/

In his 1943 article Autistic Disturbances of Affective Contact, Kanner said:

"With the non-language items of the Binet and Merril-Palmer tests, she [case 6, Virginia S.] achieved an IQ of 94. 'Without a doubt' commented the psychologist, 'her intelligence is superior to this'"

"A Binet test was attempted ... He [case 8, Alfred L.] finally complied in most instances in a manner that clearly indicated that he wanted to get through with the particular intrusion; this was repeated with each individual item in the test. In the end he achieved an IQ of 140." [Note: Alfred L and Virginia S were the only two children who cooperated enough for an IQ test.]

"Even though most of these children were at one point or another looked upon as feebleminded, they are all unquestioning endowed with good cognitive potentialities... The astounding vocabulary of the speaking children, the excellent memory for events of several years before, the phenomenal rote memory for poems and names, and the precise recollection of complex patterns and sequences, bespeak good intelligence in the sense in which this word is commonly used."

So clearly Kanner described children with average and above average IQs. Nowadays, the less cooperative children would likely have been tested and their refusals interpreted, robot-like, as wrong answers, just like my autistic friend who was declared profoundly delayed because he didn't cooperate at all with the test. Personally, I think Kanner's way, of declaring them 'untestable' and observing spontaneous signs of their abilities, is more fair.

"Most children and young people with Kanner syndrome will have moderate or severe learning difficulties and up to half may not learn to use spoken language."

http://www.southglos.gov.uk/NR/exeres/f55bba89-c85c-484a-b6ca-0165feaef454


"Kanners usually have a below-normal IQ
while Aspergers have a normal-above IQ
Kanners usually have a delay in speech
Aspergers usually don't"
http://www.autismspeaks.org/community/forums/archive/index.php/t-4438.html

The first part of these two statements is the same as the previous two innacurate statements. As for the second part, here's another quote from his 1943 article:

"Eight of the eleven children acquired the ability to speak either at the usual age or after some delay." [Of the speaking children, at least 5 spoke their first words before age 2, and at least 3 were using sentences by age 3.]

Although communication impairment, such as echolalia and not using speech communicatively, was present in all of Kanner's cases, most learned to speak, many at the usual age.

"Kanner’s Syndrome is often the lowest functioning end of the disorder, and these children (and adults) tend to be very drawn into themselves and have extremely limited communication skills."
http://ezinearticles.com/?What-Are-The-Different-Autism-Types-in-Children&id=510099


"Kanner described children who were severely affected. His description, and the downbeat prognosis persisted for the next 30 years."
http://www.patient.co.uk/showdoc/40000711

Regarding low functioning, Kanner's highest functioning case was Donald T., who in his follow-up in 1971 was described as such:

"Since receiving his AB degree in 1958, he has worked as a bank teller. He is satisfied to remain a teller, having no real desire for promotion. He meets the public there real well. ... He takes very little part in social conversation and shows no interest in the opposite sex. While Don is not completely normal, he has taken his place in society very well, so much better than we ever hoped for. If he can maintain status quo, I think he has adjusted sufficiently to take care of himself." [He wrote another article in 1972 giving case descriptions of several high functioning autistics.]

The prognosis was originally described in 1943 as:

"Five of our children have by now reached ages between 9 and 11 years. Except for Vivian S., [sic] who has been dumped in a school for the feebleminded, they show a very interesting course. The basic desire for aloneness and sameness has remained essentially unchanged, but there has been a varying degree of emergence from solitude ... Between the ages of 5 and 6 years, they abandon the echolalia and learn spontaneously to use personal pronouns with adequate reference. Language becomes more communicative, at first in the sense of a question-and-answer exercise, and then in the sense of greater spontaneity of sentence formation. ... Between the ages of 6 and 8, the children begin to play in a group, still never with the other members of the play group, but at least on the periphery alongside the group. Reading skill is acquired quickly"

Kanner made his opposition to institutionalizing autistics clear, and predicted poor outcomes for them, but if cared for in their own or a foster home, he predicted they would improve. A few would become high functioning enough to live and work independently, and those who didn't could still contribute.

"Kanner regarded autism as a consequence of harmful childrearing practices."
http://www.utoronto.ca/writing/paraphrase.html

And here they confuse him with Bruno Bettelheim, it seems. From his 1943 article:

"In the whole group, there are very few really warmhearted mothers and fathers. ... Even some of the happiest marriages are rather cold and formal affairs. Three of the marriages were dismal failures. The question arises whether or to what extent this fact has contributed to the condition of the children. The children's aloneness from the beginning of life makes it difficult to attribute the whole picture exclusively to the type of the early parental relations with our patients. We must, then, assume that these children have come into the world with innate inability to form the usual, biologically provided contact with people, just as other children come into the world with innate physical or intellectual handicaps. If this assumption is correct, a further study of our children may help to furnish concrete criteria regarding the still diffuse notions about the constitutional components of emotional reactivity. For here we seem to have pure-culture examples of inborn autistic disturbances of affective contact."

And in his follow-up:

"As for the all-important matter of etiology, the early development of the 11 children left no other choice than the assumption that they had 'come into the world with an innate disability to form the usual, biologically provided contact with people.' ... One can say now unhesitatingly that this assumption has become a certainty. Some people seem to have completely overlooked this statement, however, as well as the passages leading up to it and have referred to the author erroniously as an advocate of postnatal 'psychogenicity.'"

So even in the 1970s, it was already going on. People mischaracterized Kanner's words even back then. But back then, he could counter them.
Lastly, I couldn't find a specific quote, but I've read of children who developed normally until 18 months or so and then regressed being referred to as having 'Kanner autism'. Only one of Kanner's cases showed any regression, Richard M. (regression in pre-speech skills) but before his regression, he was described this way:

"The mother, in comparing her two children, recalled that while her younger child showed an active reaction to being picked up, Richard had not shown any physiognomic or postural sign of preparedness and had failed to adjust his body to being held by her or the nurse."

Kanner emphasized that these children were all noticeably abnormal in early infancy, commenting that they could not be called 'withdrawn' because they'd never been connected in the first place.