I have just read Jessica Mosby's review Over the hills and far away: a family treks across Mongolia to help their autistic son, which is a part of this month's focus on disability issues. It is about a documentary showing "journalist father and professor mother take their young autistic son on a summer vacation to Mongolia... all in an attempt to help cure their son after Western medicine has failed". It prompted me to write this post, going as public with personal issues as I have never done before.
My elder son, after initial 18 months of typical development, lost his first words and became withdrawn and obsessed with symbols. Some experts said he had autism; I read what I could find about the condition, and it was all doom and gloom. As my child after regressing reached a plateau and spent a year without acquiring any visible skill, I was depressed and even considered trying gluten-free-casein-free diet, which other autism parents swear has done wonders with their children.
Happily, one day, as I was searching the Web on autism issues, I found an essay by an autistic man titled "Autism, genius and greatness". Unfortunately, the author has since removed his site, but some of his works survive on other sites, so you can read the essay here. He was arguing that autistic people can make unique and important contribution to society, so it is in the interest of society to stop harassing them and let them be who they are. I read all published works by the author and realized that he considered his autism part of his personality and despite the tremendous difficulties resulting from his condition wouldn't want to be cured even if this was possible, because the cured person would no longer be him. This was a view on autism totally different from everything I had met before. In fact, to my shame, I hadn't specifically looked for opinions by autistic people but only for experts' opinions about autism. I realized that parents, coming across autism (or, in a broader sense, disability) in their child, shouldn't think first and foremost about "cure"; this is in most cases nonexistent and only sends the child a message that he is not acceptable to society and even to his family as he is (and besides, obsession with curing disability serves as excellent excuse for those in power to deny much needed accommodations, implying that the problem is in the disability itself and not in the arrogant discrimination by the non-disabled majority).
I contacted autistic adults and parents of autistic children who were more concerned with helping their children than with curing them. This was of much help to me and brought me out of the depression, which was good for everybody. To other people in this position, I would recommend the blogs of the Autism Hub and also the Yahoo! group AutAdvo (the latter requires registration for access because personal matters are discussed).
Meanwhile, my son after his 3rd birthday slowly started to reconnect to the world and resume speech. I brought him to another expert, an old experienced pediatrician. He said, "Autism is a fashionable diagnosis now. 30 years ago, children like your son were not diagnosed, now they often are. So what if we call autism what your son has? First, it is incurable; second, it is a part of his personality, of who he is. I advise you not to label him at age 3 and not to start "therapies". The problem with most experts is that they have an idea of what is normal. Confronting a marked, unusual personality like your son's, they'll attempt to mold him after their perception of the norm, with the most likely result of crushing him. Be patient and understanding and prepared that your son will always be excentric and not teachers' favorite. Engage areas where he is strong and give him time to catch up in areas where he is weak. After he is interested in letters and numbers, surround him with them. Don't insist on reading tales to him after he isn't interested." Professional experience had made this doctor come to the same ideas as autistic people, although he didn't seem to be on the spectrum himself.
From what I know now, I think my son has hyperlexia - a condition characterized by late talking, early reading, early signs of autism (often with regression) and more typical later development, though the people affected remain "different" inside for life, as I am in fact myself.
My son is now 5, attends a typical kindergarten with an art club which I think is a good substitute of occupational therapy. Sometimes I bring him to a speech therapist.
Though looking after him (and his younger brother) and my work leave me little time and forces for anything else, I am trying to advocate for other autistic and disabled people, for those whose development will never come close to the so-called "norm" and will need accommodations and services for life. With some remorse, I remember a classmate to whom we and the teachers were mean and who (as I think now) must have had attention deficit - hyperactivity disorder.
My advice to other parents of autistic children:
First, don't succumb to depression. This will only make things worse. Many experts and other people will paint things black and try to crush your spirit so that to show their power over you. Run away from such people.
Evaluate your child's sensory issues as precisely as possible. Sometimes, children with hearing and even vision problems are misdiagnosed as autistic.
Don't be obsessed with cure and even treatments. The development of a child depends most on his genetic/biological hardware. Accept him for who he is.
Don't try on your child any alternative treatments. Whatever other parents may say, such treatments are useless at best, harmful and dangerous at worst. They have literally costed the lives of some autistic children. Be careful also with mainstream treatments if they are aimed just at forcing normality down your child's throat. Speech, occupational and physical therapy are good, but if your child resists them, immediately change the therapist.
Build your child's self-esteem. Do not try to dissuade him from his "precocious" or "unusual" special interests. Help him to develop them into possible means of occupation. Unfortunately, society often accepts those who are different only if they are exceptionally good at something useful.
If your child is still non-verbal at age 3 - 3.5, consider teaching him an alternative method of communication, such as spelling, sign language or picture-exchange communication (depending on the child's inclinatons). Never try to neglect his generic communication (pointing, screaming etc.) with the hope that this will "make him speak".
Be very understanding. Your child has tantrums because he cannot communicate his desires to you or because he is in a sensory overload. He has difficulties in self-care skills and toilet training because sensory issues make it difficult for him to perceive his own body. Your anger (though sometimes inevitable) is not expected to help.
Care for the financial status of your family. Try to keep your job, if possible. Run away from every "expert" promising to rescue your child from the abyss of autism by separating you from your money. Even decent therapies sometimes aren't as good as toys and vacations that can be bought with the same money.
Contact other parents in your situation, autistic adults, other disabled people. While your child's interests are of course your first priority, try to be engaged with the rights of all disabled people and all others who are victims of discrimination.
If you like, you may contact me at mayamarkov at gmail dot com.
I am so sad about the women of Iran, about all oppressed innocent people of Iran.
Thank you for writing this! I will repost a part of it on my blog.
Posted by Maya M | March 15, 2010 12:56 AM
Comparing the congenital heart defects incidence in Falluja to that in Europe, rather than to that in the same city in earlier years, in other Iraqi cities or in other Mideast countries, should immediately raise the red flag.
Hoffman et al. (2002) in their article "The incidence of congenital heart disease" (J Am Coll Cardiol, 2002; 39:1890-1900) point out that this incidence varies greatly depending on which defects you count, and that including all of them gives a rate of 75/1,000 live births - only a little less than reported here for Falluja.
Of course there may be true increase in birth defects causally linked to the US weapons; but so far, the data presented remind me the infamous "vaccines cause autism" speculation.
Posted by Maya M | March 10, 2010 3:47 AM
My own interest in autism started when my son showed some symptoms and experts tried to convince me that he needed rigorous pushing to be "normalized". Happily, other experts and autistic adults gave me quite different advice - to accept him for who he is. Most autistic adults (and people with other differences) in fact wouldn't want to be cured even if it was possible. They want instead acceptance, non-discrimination and support when needed.
Naturally, autistic activists regard "Autism speaks" as an enemy because this organization reinforces the stigma on autism and wishes to eradicate it together with its carriers. Recently, it showed its true colors and threatened to sue a 14-year-old autistic child for parody. Details e.g. in the 2008 article "Voices of autism 'silenced' by charity" by Celeste Biever in the New Scientist:
http://www.newscientist.com/article/mg19726414.300-voices-of-autism-silenced-by-charity.html
and in this post by a female autistic blogger: http://autisticbfh.blogspot.com/2008/01/autism-speaks-silences-autistic-child.html
I wish also to mention that many experts disagree that true autism prevalence is increasing. Their opinion is that severely autistic children who are now diagnosed as autistic a generation ago were diagnosed as mentally retarded, while mildly autistic children (like my son) who are now diagnosed as autistic, a generation ago were regarded just as "strange".
For example, a 2006 article by Paul T. Shattuck in the journal "Pediatrics" finds that "Higher autism prevalence was significantly associated with corresponding declines in the prevalence of mental retardation and learning disabilities... Prevalence findings from special education data do not support the claim of an autism epidemic." (http://pediatrics.aappublications.org/cgi/content/abstract/117/4/1028)
Lay readers will probably make more use of the post "Five Easy Graphs" by a molecular biologist and father of autistic child who blogs under the name Prometheus:
http://photoninthedarkness.com/?p=158
Sorry for the long comment.
Posted by Maya M | July 25, 2009 3:18 PM
I am not at all surprised that those having power in Turkey, after proudly committing a genocide, now indoctrinate their grandchildren that the Turks have been the victims. Hadn't Germany been defeated in WWII, we could expect textbooks teaching German children how the evil the Jews had been, and the world telling Jewish survivors that they must get over the Holocaust and it is for their own good to stop this culture of victimization.
Posted by Maya M | April 18, 2009 3:25 AM
I have lived under a despot, and I can testify first-hand that it is a difficult work to take out a despot from within. Besides, most despots make countries stable. I don't think we should opt for despotism for that reason.
Posted by Maya M | February 4, 2009 1:31 AM
While I generally agree with you, I would wish in a number of cases to see more tight regulation by law, instead of leaving life-and-death decisions to either the doctors or the patients themselves. This is especially true in cases when one person makes decisions on behalf of another one. I wouldn't like to see a fad of parents managing their boys with short (but still normal) stature to receive growth hormones; this could trigger parents of marginally taller boys to do the same and so on, with unpredictable results. I have very mixed feelings about the treatment of Ashley X. I am against allowing relations or spouses like Michael Schiavo (often with conflicts of interests) to terminate the lives of disabled people. And even when the end-of-life decision is taken by the patient himself, I am against it. As disability activists rightly state, if euthanasia really is a matter of personal autonomy, then this "service" must be provided to all people, not just the elderly and the disabled. I wouldn't wish to see defenseless people undergoing legal mass suicide in order to avoid mistreatment in nursery homes or to stop "being a burden" to other people.
Posted by Maya M | January 22, 2009 4:55 AM
"Austria has inhaled enough people - we are full."
Excellent article.
Posted by Maya M | January 22, 2009 4:36 AM
"What I can say with certainty is that it is entirely justified to question Israel and to hold them to the same international standards that the world would hold China, Australia, Germany and Russia to in a similar conflict."
However, I don't see anybody holding China to any standard in relation to its oppression of Tibetans and dissidents or its malicious role in the Darfur conflict; neither is Russia being held to any standard in its aggression against Georgia and its genocide against the Chechens. Not speaking that China, Australia, Germany and Russia simply cannot be in a "similar" conflict because none of them has (or at least hasn't had since World War II) any enemy committed to its physical destruction.
Anyway, the point of my comment was to link to an article by Israeli journalist Lisa Goldman, which I think readers will like:
http://lisagoldman.net/2009/01/07/haniyeh-and-his-israeli-sisters-wartime-tales-from-gaza-and-israel/
Posted by Maya M | January 10, 2009 1:15 AM
I think those guys should be let alone, as long as they only talk hate and walk around in their boots and with a little more hair than brain. It is dangerous but democracy is inherently dangerous, isn't it? I don't see how authorities could intervene before these guys have taken knives or guns to actually attack somebody. We in Sofia, Bulgaria have a somewhat similar situation. A permit has just been given to build a second mosque in the city. Many resident are now signing petitions against the construction, saying that they don't want here to happen what has already happened in Britain, Spain, Denmark, France and the Netherlands. But I don't see how people can be refused the right to pray. In summary, you are not allowed to take any action against a small fire, you have to wait until it becomes big and only then extinguish it.
Posted by Maya M | December 20, 2008 5:28 AM
I can only hope this remarkable, valiant woman is alive and in good condition.
Posted by Maya M | December 20, 2008 5:12 AM