Accepting autism

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My elder son, after initial 18 months of typical development, lost his first words and became withdrawn and obsessed with symbols.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.