Tuesday, June 28, 2011
Rearranging our possessions bothers me. I like things where I like them. So, after I return from these short drives, I try to restore my sense of order as best I can, while knowing some things need to be packed and hidden.
My wife did the house hunting for the new home. She's dealing with strangers in our house. I hate both processes, so it is best that she handled these tasks. I'd want to clean the homes as I toured them. When we looked at homes before moving into our current residence, I hated seeing how little people care for their homes. I like things clean and maintained.
The idea people have walked through our house bothers me. I wish the house could be perfect before letting others see it.
When we move, I plan to remodel the entire house and yard. New everything, over a few years. It is a need to have things my way, certainly, but also a need to feel like the "previously occupied" house is a new house for us. As we start work on the new house, I'm sure I'll have plenty of stories of frustration.
This move is it for us. I'm going to do all I can to be the best at my new job. I will also do all I can as a freelance writer. Ideally, I earn enough additional income from writing that we can do wonders with the new house.
Saturday, June 25, 2011
But, this study finds evidence that city life itself changes the brain. The implications are fairly important. Humans didn't live in cities of millions until recently. We did not evolve in groups much larger than a few thousand, and more often our social groups are under a thousand people. We're only emotionally wired to handle connections to 150 people or fewer. We deal with 1000 or more by connecting though our close connections. We connect beyond the 150, in other words, but we do so via networking.
City Life Could Change Your Brain for the Worse | Wired Science | Wired.com: "A study of German college students suggests that urbanite brains are more susceptible to stress, particularly social stress, than those of country dwellers. The findings don’t indicate which aspects of city life had changed the students’ brains, but provide a framework for future investigations.City life does not agree with me, not in the least. I can't relax for a minute living in the Twin Cities. I hear the constant traffic, sirens, trains, trucks, busses, and other noises. I've written here several times about the sensory overload that is the city.
“Whether people are exposed to noise, live near a park, have a big group of friends or not — you can do those experiments, and tease apart which parts of urban living are associated with these changes,” said Andreas Meyer-Lindenberg, a psychiatrist at German’s Central Institute of Mental Health.
Meyer-Lindenberg’s findings, published June 23 in Nature, are a neurological investigation into the underpinnings of a disturbing social trend: As a rule, city life seems to generate mental illness.
Compared to their rural counterparts, city dwellers have higher levels of anxiety and mood disorders. The schizophrenia risk of people raised in cities is almost double. Literature on the effect is so thorough that researchers say it’s not just correlation, as might be expected if anxious people preferred to live in cities. Neither is it a result of heredity. It’s a cause-and-effect relationship between environment and mind."
Meyer-Lindenberg’s team repeated the study twice more with a total of 70 more students. Each time the same pattern emerged. The researchers then looked for links to age, education, income, marital and family status, mood and personality. But when those were taken into account, the pattern still remained.
The larger the city in which a student lived, the more active their amygdala. The longer they’d lived in a city as a child, the more active their cingulate cortex. In other studies, the cingulate cortex has been described as
especially sensitive to early-life stress, with alterations linked to adult psychological problems.
I don't know how any autistic lives in a huge metropolis without going insane. The Twin Cities aren't even that large and they are way too much for me. Cities are like rat mazes, dehumanizing and horrible places.
People pushing urban living in the name of sustainability don't seem to recognize that humans were not meant to live like this. Cities contradict our very natures. Becoming desensitized to the stimulation doesn't sound great to me. Eventually, people in cities seem to be desensitized to humans, as well. How is that a good thing?
Friday, June 24, 2011
My most recent blog entry on the topic was:
Autism Therapies and The Autistic Individual
One of the readers of my blog sent a note that included the following:
"Your experiences were in the 1970s and 80s. Things have changed. You don't know what is done now for autistics."My last individual appointment with a counselor specializing in autism was in late November 2006. That is not ancient history. I also had a follow-up evaluation in early 2007 during which the psychiatrist was condescending, critical, and inattentive to anything I was trying to explain to her. (I won't write about her or her assistant. Pointless waste of several days.)
In 2006, the University of Minnesota's Disability Services had asked a campus counselor to help develop a list of concerns we could present to instructors to help them understand my physical limitations and cognitive differences. This was shortly after I had lost a job and had been called "Gimp" after falling in a university hallway. The job loss had a lot to do with people being "uncomfortable" around me. I believed it was because I used the cane and moved in a rather "weird" manner. There's more, but the reason to see the counselor was simple: obtain a written list of traits for faculty, so I'd have some legal protections against discrimination.
Meetings began in early October. I kept waiting for the list for Disability Services. The counselor didn't help write the list. Six weekly meetings passed and no list. Instead, I was feeling worse and worse about being different. I was starting to despise the university, some of the faculty, a few of my peers, and the entire disregard for my differences.
Any problems I was having started to feel like my fault. It was as if I purposely chose to be different and wasn't willing to change. I was resisting adapting, the counselor implied. Yes, because migraines, back pain, severe leg and foot pain, those are all symptoms of an unwillingness to adapt.
The counselor talked several times about having an autistic relative. He told me how much he understood my traits. He would help me overcome them. You think I hadn't tried for 40 years to change? Plenty of people had told me I was defective. I know I'm supposed to be different according to too many people.
I finally terminated the sessions. As I stood shaking violently, I told the counselor he had helped the ignorant faculty by making me feel lousy. I wasn't coming back.
Before that, I met briefly with an educational specialist to deal with focus issues in the late 1990s. I had stumbled badly at work and in an attempt to return to graduate school. I couldn't focus and I couldn't deal well with sensory issues. The educational psychologist had the psychiatrist with whom he worked prescribe Ritalin (the generic) and various other medications. That psychiatrist interviewed me for less than fifteen minutes.
The educational psychologist? He went way, way off the anticipated path of dealing with my focus issues and inability to deal with ethical gray areas and school and work. My rigid thinking was a demonstrable problem in both settings. The medications were for those issues, the psychologist said.
I'm not going to detail everything the psychologist suggested were issues in my life. Suffice it to say, I was too trusting and assumed his advice was correct, no matter what I was feeling or thinking about the advice. My relationship with my wife was damaged, certainly, and other relationships were affected negatively.
I'm not on any medication now. Turns out, while I might be considered ADD/ADHD, the medications aren't useful. I write 1000 or more words a day, and have for the last three years. Yes, I do a lot better after I stopped seeking help.
If I'm in pain and physical distress, I'm not going to force myself to ignore those important warning signs.
How do I know the psychologists, psychiatrists, and counselors were wrong? Because in the end medical doctors discovered I had real physical problems, possibly for years, that had caused traits confused for "acting autistic." I had a dangerously low blood count and needed transfusions. The top epithelial layers of both eyes had torn repeatedly, due to base membrane dystrophy. The pain of eye injuries is so intense many people faint, a doctor informed my wife and me. I had experienced numerous eye tears, maybe as many as three or four dozen. Think about that. I've now had several eye surgeries, including a laser procedure.
And the mental health people? They told me I couldn't focus and read because of autism. I couldn't handle lights in a room because of autism. I was afraid of sleeping (when my eyes often tore) because of autism. Yep, it was all autism. Even when I said, "My eyes hurt. They really do hurt."
I was told autistic children often say the same thing. Okay. Maybe those children have eye problems?
I even had a hernia. In 2011, we discovered I had real nerve damage in a my left foot, from years of a problem that had never been addressed. That one reason I walked "oddly" — not autism. (Being partially paralyzed also affects my gait.)
So, a great many "autistic" things were serious physical conditions. The mental health experts were so biased after reading various diagnoses that they couldn't see the physical complaints were real. The pain was not a symptom of emotional or cognitive issues.
At least EIGHT mental health professionals in two states had tried to address the wrong issues within a decade. And their approach, even if my issues had been related to autism, were simply not the best for an autistic individual. And that's not counting my childhood experiences!
I haven't written about even a fraction of the lousy "therapies" I've seen personally or been asked about by parents. Stunningly bad therapeutic approaches, from at least this one man's autistic perspective.
Yes, I'm biased. I think most people would be.
Tuesday, June 21, 2011
Many of the questions I do receive following public appearances do deal with sexuality and romance. I know there are some texts on autism and sexuality, but I am wondering if I should prepare a separate book on those matters.
Writing about sexuality is a challenge because I don't believe there are "norms" of sexuality that can be neatly organized along autistic / non-autistic lines. We can discuss studies of human sexuality and surveys of opinion on the physical and emotional aspects of relationships, but there is a lot of variety among all people.
I have included a section in A Spectrum of Relationships on how some autistics report their sensory issues affect physical aspects of romantic relationships. Obviously if you do not like being touched, strong body odors, and anything "dirty" then sexual contact might be problematic.
Any compromises have to be made with a romantic partner. In a book on romance and sexuality, I could explain how some couples have dealt with these issues and include interviews. I'm not sure any guide can guide an adult towards solutions for those issues, but I can explain what others have done.
If I were to write a book on sexuality in the same way I approached A Spectrum of Relationships, it would include some personal experiences and notes. It is a little strange to consider such things, and I'd only share what my wife and I agreed was acceptable.
A guide to sex and relationships will include language and concepts that might offend some readers. The book would not be for everyone, including some adults.
I would do as I did with A Spectrum of Relationships and post parts of the initial, rough drafts to this blog while I tried to fine-tune sections. Sections of a guide to sex and romance would be edited for the blog, no matter what, since blogs are more public than a book. I don't want to tag this blog as inappropriate for some readers. The final version of A Spectrum of Relationships reflects the suggestions of blog readers and I'm sure it is a better text as a result.
Maybe there aren't enough detailed, frank books on sexuality and ASDs? Would a guide be useful? How much should be included? How detailed should it be? What shouldn't be included?
Thursday, June 16, 2011
Early in that post, I address the problems with the term "Applied Behavior Analysis" (ABA) being applied as a generic term for all therapies associated with the Revised Lovaas therapies (Dr. Lovaas' original approach developed at UCLA in the 1970s, minus the aversions). The problem within the autism community is that most parents associate ABA with this 8 hr/day, 40 hr/week approach to treating autism-related behaviors.
Here is what I wrote at the time:
I do not and cannot agree with some "neurodiversity" activists that we should not research "ABA" therapies. First, this assumes all ABA is still dependent on the out-dated and discredited early Lovaas work. Second, we cannot ignore the fact that the brain is more adaptable at early ages.
We know children do learn languages easier than adults, and I don't believe it is a stretch to theorize that young minds are more likely to respond to any behavioral therapies.
I'm not convinced that ABA therapies, sensory integration therapies, or many other therapies for autism have a sufficiently high rate of success. I also believe some therapies are so discredited that they should be abandoned entirely, as research has found no credible evidence of success. Facilitated communication falls into the category of "Abandon it, already!"I do not oppose all therapies, but the therapies many parents are persuaded to try might have more negative effects than long-term, lasting positive effects. We cannot allow self-injurious behaviors, for example. Violent, dangerous behaviors must be helped. I know that and support any and all research that might help prevent serious harm to either the autistic person or others.
My own experiences with a number of "educational therapists" and other experts have been less than wonderful. That has definitely biased me. I can recall six such experts specifically, all in different locations and with different affiliations, who did nothing but make me feel lousy about myself. These supposed support specialists lowered my self-esteem and left me with the sense I was damaged, a broken object to be repaired at least well enough to not shock or offend other people.
Parents pay anywhere from $45 to $125/hr in most cities for a BCBA (Board Certified Behavior Analyst) to work with an autistic child. The highest "success rate" for ABA I have located in peer-reviewed journals is 47%, and that was for interventions starting before the age of five, conducted for 40 hours weekly over at least six months. But, it wasn't clear how "success" was defined or for how long the success (change in behavior, I assume) was maintained without constant support.
In point of fact, the 47% rate of success seems to come from a single source. Yes, it happens to be Lovaas:
In the most comprehensive and best controlled of these studies, Lovaas (1987) compared 40 hours a week of intensive 1:1 behavior analytic treatment to a minimal treatment control group (less than 10 hours of 1:1 instruction), and to a second group of children receiving non-behavioral services elsewhere. Among the intensive treatment recipients, 47% (9 of 19) successfully completed first grade and scored in the average to above average range on standardized IQ tests and other measures (Lovaas, 1987).Other studies have achieved a 30% to 35% success rate, but with significant need for follow-up and continuing therapies for several years. What about the other 65% to 70% of the children in these studies? No observed behavioral improvement outside the therapeutic setting. In other words, when the child is at home without a therapist the "undesirable" traits resurface. The same is true of studies focused on "Social Stories" — about a third of children respond and retain the lessons for more than a week. And that's called a successful approach to therapy.
We must do better for autistic children, teens, and adults. There must be better approaches. I just do not know what they are or how to discover them. I'm sorry, but I have no great ideas for helping more people — but I know we must help them.
I lack faith in psychological supports. I'm a skeptic, and I admit it. My observations at schools and my discussions with parents across the nation have done little to improve my outlook towards therapies for autistic children. I often wonder what the child is trying to tell the adults. I know, from experience, the child is shaking, screaming, or crying for a reason. The child isn't misbehaving! He or she is communicating distress, often painful distress.
Even as an adult, the mental health experts have been better at doing damage than finding solutions to what were, it turns out, physical conditions being confused with psychological issues. For example, I had dangerously low blood counts that went undiagnosed for six months or more. I reported being dizzy and feeling "slow" mentally. I was referred to a psychologist for testing and she said some pretty stupid things.
I was told I needed to learn how to "stop being autistic" by one counselor in Minnesota. I needed to "mask the traits" if I wanted to succeed. I asked how being slow and dizzy was an autistic thing. Apparently, it just is.
Sometimes, there really is a reason for a behavior or trait, but professionals trained in one discipline are too quick to assume they know the cause. They see what they were trained to see: cognitive issues or mental health issues, in my case. Turns out, I was dizzy for a darn good reason — internal blood loss. A physician finally discovered this after I fainted in a medical office and was rushed to the emergency room.
Funny, it had nothing at all to do with behaving autistic.
I was left with the sense that things haven't improved much since my childhood, when I was told to stop being "so hyper."
The challenge I have communicating physical conditions led several highly trained mental health experts to assume I was simply "being autistic" and didn't have a real problem. Ironically, I'm in a city with the best of the best medical and mental health experts, but they really don't understand when an autistic person is trying to tell them something.
All the experts wanted me to do was feign normalcy, no matter how much physical pain I was in. The pain response was what was being deemed "autistic" by these psychologists and psychiatrists.
This leads me to wonder how many autistic traits "treated" by therapy are really an attempt to communicate agony, pain, suffering, et cetera. I know I was just trying to get someone to understand my extreme distress. Instead, I was told to stop being autistic.
That's what my childhood was like, too. I would fidget and gripe and whine. I have a real, serious brachial plexus injury and spinal issues, but the "behavioral" experts didn't listen — they wanted me to stop expressing agony. It would be like telling anyone else, "Ignore the knife in your head. Act normal or you won't get a gold star!"
I wish more experts knew what it was like from the autistic perspective. The person sitting across the table or the child on the play mat is an autistic individual.
Tuesday, June 14, 2011
Several people wanted me to address the "full spectrum" in the book. That isn't possible, at least not in a single book. Really, the most affected children, teens, and adults require highly specialized supports that are beyond what a book can offer. The best advice I can offer to families of those with the most debilitating mix of physical, intellectual, and emotional impairments is to sit down with experts and develop an individualized support system.
I'm not as socially aware as many other autistic adults, nor am I as severely affected as many of the children I've met. A Spectrum of Relationships, therefore, is going to include a lot of the information and advice offered to me by parents, educators, and autistic individuals. It is important to offer as many views and experiences as possible, since those might reflect the needs of the readers.
Right now, I'm working on a chapter on family relationships. No one can tell me that simply hearing the word "autism" didn't change how a child was treated. The diagnosis of autism can carry with it guilt, depression, despair, and many other emotions. It can also be financially draining. As a result, parental relationships are different in families with a disabled child. I hope to have that chapter done later this week.
I will be working hard to make the July deadline. I have to, because we're in the process of selling our home and relocating for my new job. There's a lot happening right now.
After the Kindle version is released, we'll see how what demand is like before formatting versions for the other eReader platforms. One of issues we are considering is the pricing. I'm leaning towards a $3.99 to $4.99 initial price, since the book reflects four years' worth of notes and research. That pricing seems fair to me, but I could be wrong.
Saturday, June 11, 2011
Dr. Manny Says Autism Breakthrough Is Real...For NowThe comments were soon filled with the standard anti-vaccine rhetoric, government conspiracy claims, and general dislike for the medical industry. But what really surprised me was a supposed "Dr." posting the following:
By Dr. Manny Alvarez
Published June 09, 2011 | FoxNews.com
…[W]hen you look at a family that delivers twins, and one is autistic and the other is not, as a scientist, I have to believe there is a genetic component to the problem.
The studies, published in the journal Neuron, appear to have proven as much. The researchers examined the genomes of more than 1,000 families in which one child was autistic and the siblings and parents were not. Their findings confirmed a growing body of evidence that autism can be caused by a random genetic mutation that could occur at any one of hundreds of different sites in the human genome.
On behalf of my son, who was born with autism, and my family, I just want to congratulate the men and women who spent years working on this research.
Sorry to rain on your parade, Dr Manny, but twins are GENETICALLY IDENTICAL. If genetics were the cause, BOTH would be autistic.I wrote a detailed response to this and waited several hours, while the response count went from 20 to 50 to 70. I then write another comment, but not as a reply. Again, it was detailed but in "plain English" (at least as plain as science can be and still be accurate).
Fox News decided not to post either comment. Yet they were quick to approve conspiracy nonsense I am accustomed to reading on the Huffington Post website when it comes to autism. It is as if the one thing left and right wingnuts can agree upon: autism is a conspiracy. What follows is roughly what I posted to Fox, and I've attempted to post similar comments to HuffPost and other sites (CBS) doing a poor job explaining the science.
Genetics and Autism: An Explanation
Much of the recent genetic research concerning autism highlights the likelihood that de novo genetic mutations are at least partially responsible for some variations we call "autism." The challenge in explaining these studies involves misunderstandings of "genetic" and "early stage mutation."
"Genetic" is not a synonym for "hereditary" but hereditary traits are genetic. Genetic merely refers to any situation involving genes -- and there are genetic injuries that occur long after conception. Apparently, even a "doctor" can confuse the two concepts. Genes might pass along traits from our parents, but from the moment we are embryos changes can take place altering those genetic predispositions.
The "de novo" mutations discussed in these three studies refer to errors often found occurring after stage 16 of embryonic development. In the standard "stages" scale, stages 16 and 17 are approximately between 38 and 44 days after conception. During stage 16 and 17 the neurological development begins. Any errors in the replication process during these few days can have critical implications. The parents' genetics might or might not predispose an embryo to genetic errors -- we do not know for certain.
The errors discussed in the papers reviewed by the FoxNews medical correspondent are what we call "copy number variation" (CNV) mutations. Anywhere from 5% to 15% of our genetic makeup contains "errors" compared to the genetic information passed along from our parents. Why this happens is unclear, but that variation is probably beneficial evolutionarily. All species seem to have some CNV mutations, likely allowing traits to emerge with beneficial traits surviving.
CNVs might be swapped, missing, or duplicated genetic information. In any set of 100 nucleotide bases, five or more will likely be "errors" in the replication process. Therefore, even identical twins aren't identical. But, we also know that the CNVs generally affect weakly-transmitted characteristics. For example, hair color or eye color are "strong" genetic characteristics and unlikely to be altered by CNVs.
While we don't know why genes get mixed up, we can demonstrate definitively that no two children, not even identical twins, have identical DNA. Identical twins simply have an overwhelming number of similar genes -- but contrary to popular belief, they cannot be perfect copies of each other. No child is born without at least some CNVs.
We also do not know why some CNVs are serious and some are not. There are many things we do not understand, yet, about genetic contributors to autism and other traits. However, we do know genetics play an important role.
Genetics are complex, but the key is knowing that the complexity seems to naturally result in variations. Some variations, like perfect pitch or a photographic memory, seem desirable. Other variations seem to be less desirable.
We seem unwilling to accept that some things really might be random. We want to believe every event correlates to a cause. Geneticists, however, cannot explain the random mutations that every one of us has.
Tuesday, June 7, 2011
I am not a cold weather person. Cold weather means clothing I hate: itch-inducing layers, gloves, thick socks, knit caps, and so on. I've written several times about hating winter wear, and my annual frostbite / frost "nip" experiences resulting from my distaste for some of the clothes.
I'm also not a huge fan of blistering heat. I'm comfortable from the low 50s into the mid 80s. There's no way to dislike a nice, partly cloudy 72F day with flowers in bloom. That's perfection, especially if you get to sit outside and relax.
Still, if I have to choose between sub-zero temperatures and the 110F summers of my youth, I'd opt for the heat — air conditioning is a great thing. The cold causes cracked skin, sore joints, and ice patches I find without any effort. Summer heat can at least be dealt with: fans, air conditioning, iced tea, and fewer clothes. No icy patches!
Summer means shorts, t-shirts, and tennis socks (low-cut ankle cuffs). Summer means sweet sun tea. Summer also means flowers, and I love flowers.
Winter in California was nearly perfect, since it seldom drops below 40F during the day. Summer in Minnesota is the opposite: the summers are nearly perfect. No wonder people "winter" in the Southwest and return to the Midwest in summer.
Summer in Minnesota might be the one season I miss. It's short, like a Central California winter, but it is beautiful.
Friday, June 3, 2011
Today I went to the medical clinic because the pain in my left leg, and the corresponding limp, had become too much to bear. I was near tears several times over the last week. I've been hesitating to put any weight on the heel of the left foot due to shooting pains, but this has caused me to put too much weight on the front of my foot, leading to a pinched nerve.
I've used a cane for many years. In 2008, an MRI found a little arthritis and the damage from a spiral fracture I suffered as a youth, but nothing to explain my limp.
Today, the physician's assistant asked a simple question: "In 2008, did anyone look at the left foot?"
No, they had not. The doctors assumed the limp was related to my previous injuries, my palsy, and scoliosis. Nobody paid much attention to the fact my foot hurt. They said it was merely a symptom of the other problems.
So, I removed my tennis shoe, sock, and nervously watched as the P.A made those knowing noises of someone agreeing with herself. She didn't need more than a minute to diagnose the problem.
"You have plantar fasciitis, aggravated by some horrible plantar warts. Do you jog or cycle? I bet it really hurts after you exercise, doesn't it?"
She said the first thing to address was the wart cluster, which were starting to inhibit my ability to stretch and flex my foot. Until the warts are treated, she explained, you can't try orthotics or other approaches for the fasciitis.
I hate to have my feet touched. I hate to see my feet. I don't like feet, in general. And here was someone staring at my foot, with its calluses and dry skin. I use medicated powders and desiccant so I won't get athlete's foot. But, apparently I still had plantar warts.
When I told the P.A. my foot had the odd calluses since 2006 or so, she said the warts were probably several years old. They had to be removed and I get to go back, at least three more times, to have the sole of my foot poked, prodded, and frozen. (Or maybe it is prodded, frozen, then poked?) It is an unpleasant, painful, process. I'll withhold the details.
I'm not sure I will ever know "bad" pain from "daily pain" because they are similar. This leads me to wonder how many other people have this problem? I know the stereotype is that men ignore pain. I don't ignore it — as my wife will attest, I complain and whine — but I also don't know when it is a medical issue versus the way my body is.
At least this medical issue is finally being addressed.