The Diagnosis of Autism: A Plea From A Parent

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Recently a parent posted a question to one of my autism posts, stating the following (edited for their privacy)"

My son turned 5 in March 2009. On Sep. 15 he started to go to K in public school in NE Philadelphia. Yesterday after few call of his teachers we've got a letter from the Principal telling us that his teacher is requesting help from another pro. & my son will participate in small group activities to help him to achive high education program needed...
I called counselor & she asked me about his eye contact & if I ever spoke to our pediatrician about that. I said "no". But since then I'm thinking about it...Can you pls help me with my concern about my little kid?
Thank you

Wow, this brought back a lot of memories, of fear, of pain, of uncertainty.  Here is what I wrote for this parent. First off, I want to point out that I'm not a psychologist, and therefore I'm not qualified to make a lot of diagnosis.  Much of what I state down here is based off of months of research, following that research, and from my own experience.  If you are ever in doubt, consult a psychologist who specializes in autism!

Hello Marina!

I'm going to edit your post to remove your phone number, in order to protect your privacy.

Now, about your son. The first thing I would tell you is that his teachers, as concerned for his welfare as they are, are not psychologists, and therefore are not qualified to diagnose autism. This is probably why they raised their concerns with you, and why they wanted you to talk with your pediatrician, who will probably refer you to a specialist. But before you panic, know that there are a number of different disorders and causes of autistic-like behavior, none of them related to autism. Only a specialist can know for sure.

Next I would tell you that panicking in general is not going to help. Don't start rushing out and looking for "cures". Don't start looking for answers from anyone but those who are conducting clinical trials and studies. Why? Because there are a lot of people out there that continue to pander to fear and fear-mongering. Celebrities, doctors with questionable ethics, and people who feel they just "know". No one knows what causes autism, or I should say what triggers it. We do know there are now currently 22 identified genes that can cause autistic-like symptoms, but no one knows why those genes mutate as they do. So don't panic about vaccinations, gluten in the diet, bad parenting, or monosodium glutamate (for autism, at any rate). Get the facts, which your psychologist will provide.

So, the first thing I would do is check with your psychologist and see what he says. Yes, lack of eye contact is one common behavior characteristic of autism, but it is not the only one. Does your son give you regular eye contact? Does he look at people in the store? Does he respond to his name with eye contact? These are some questions your psychologist may ask of you.

Also, is your son verbal? Has he been speaking all this time? Has that changed? Does he speak less, is his speech slurred at all? Does he say random things out of the blue? These are other questions your psychologist may ask you.

Now, if your son does indeed get diagnosed as having autism by a qualified specialist (i.e., a psychologist), here are some things to keep in mind. YOU ARE NOT TO BLAME! Autism is not caused by bad parenting, pandering, or abuse. Regardless of what some radio talk show hosts have said, parents do not cause autism. Doctors do not cause autism. Vaccinations do not cause autism. Heartless corporations do not cause autism. Politicians of any party do not cause autism. Government does not cause autism. No one is "hiding the facts", no one has snuck in poisons to your son to make him autistic. It's a result of genetic mutation(s) that cause the brain to produce too many neurons (causing an enlarged brain or overly dense brain), and/or to slow or halt neuron pruning that begins roughly at the age of 2 and ends roughly at the age of 6. That is autism in a nutshell. All the meltdowns, the social issues, the lack of eye contact, the difficulty in speech, the sensitivity to sound, touch, light changes, etc. all come down to many more neurons within the brain than a neurotypical child.

1. Your son is in good company! Many of the geniuses of the past had autism. Albert Einstein, Nikola Tesla, and Vincent van Gogh, to name a few. His mind will be thicker, more dense than a neurotypical child, and as such he can process and retain more information and more detail. The only side effect from this extraordinary ability is the inability to judge social situations on the fly. So, he may need more schooling in social interaction. There are a couple of ways to do this, which I will number.

2. Find out if your public school has an autism program. Many do across the nation, though not all do. I'm not sure about PA, so you may want to contact your district and find out. If they do, get to know the teacher and her aides. Do they seem like your son's success is important to them? Do they understand autistic children? My son is lucky, his teacher has an autistic child, and therefore completely understands what we parents go through. If they don't know, or don't seem to care, find another teacher. It's your right as a parent to demand a proper education environment for parents. Make sure they know what Applied Behavioral Therapy is, and how to implement it (It's called ABA, and there is a lot of good info on Wikipedia if you need more info).

3. Get a dog, if you can, or another animal in the house that your son can interact with. I don't recommend cats, because they are only social on their terms, and behave actually a lot like someone with Asperger's syndrome (on the autistic spectrum). That, and they can be less tolerant with children than many dogs (at least our cat is). Dogs are excellent for children with autism, whether or not they are trained as "autism dogs". You may have heard that horseback riding can help with autistic children.. This is true, at least as far as some clinical studies have shown. But it's the same concept: have a connection with an animal that requires some social interaction, but is non-threatening about it. Any animal can help, not just horses or dogs. If you can't get an animal, spend some time at a petting zoo. If there is no petting zoo, see if you have a friend with a dog. Animal interactions are great fun, and do help.

4. Be prepared for frustration, at every corner. Know that people are intolerant in general, and more so if they detect any deviance from what they consider the norm. Learn to grow a thick skin, it's the only way to deal with it. You can't change other people's perceptions, you can only change your own. I would recommend printing up cards that have links to various autism websites that explain autism, should someone suggest your child is just badly behaved or your parenting skills are not up to their standard. While I have never had to give out any, I've come close a couple of times. Though now you are more likely to meet someone who has an autistic child in their life than ever before.

And finally, my last bit of advice is to love your son. Love every new discovery. Love every funny, quirky personality trait. Autistic children are just like other children, but tend to live in a different world, or a different level of the world we are in. Encourage your son in his interests, looking always for a future career. If he has an interest in music at all, go for it! Nothing is better for an autistic child than playing an instrument of some sort. Even if it's the drums, it's something that will teach him creativity and meld it with the mathematical order that will appeal to his brain.

There are so many more things I could tell you, but I want you to have the joy of experiencing them yourself. If you do have any questions, feel free to post them on the blog, and I'll get back to you.

Good luck!