Thursday, April 26, 2007

Awareness - not just about severe autism

Recently after ABC's The View and MTV's True Life shows focusing on autism, I've been hearing a lot of parents complaining that the media is not showing more severe cases, with kids displaying more extreme behaviors. "They have to show what real autism is", said the mother of a non-verbal teenager that I know. However, I think the problem is quite the opposite. Before I had my own child diagnosed with autism, this is what I had learnt from reading newspapers and magazine articles, and watching movies and TV shows: autistics will not give you eye contact, do not show affection, rock their bodies and flap hands, hit their heads on the wall on purpose, and have little or no language. So when my child showed NONE of those characteristics, but yet had a very strange pattern of language development (echolalia), and did not point to show and make comments about his interests, I thought he had some kind of speech delay, and an independent personality, but autism was the farthest thing from my mind. "He gives me great eye contact, he hugs and kisses people all the time, he doesn't bang his head, he turns to us when we call his name, he doesn't get overwhelmed in crowded or loud places, there's no way he's autistic!" I thought to myself, after reading a few articles about the disorder. As a matter of fact, one speech therapist saw my son at 2 1/2 years old - when I was worried that he still didn't talk in sentences or answered to questions - and she thought he was a neurotypical that would just turn out to be a late talker.

It took a chance encounter with an elementary school teacher a couple of months later to open our eyes to our son's autism. He was a friend of a friend who happened to show up at our house, and expressed his concern to my husband when he noticed my son's repetitive play, scripted language, and aloof manner. That same week, the teachers at his preschool told us that while our son was very sweet and well behaved, and extremely smart with academics, he was always playing by himself and not engaging enough in communication with the teachers, and had a significant language delay. They didn't know what his problem was, but they urged us to seek an evaluation. We asked the pediatrician for an urgent referral, and meanwhile started researching feverishly on the internet. On the more informational websites, we could confirm that my son's autism should have been obvious all along, with the narrow interests, lining up of toys, echolalia and scripted language, hyperactivity, perseverative and repetitive behaviors, etc. Even his uncanny ability to read letters and numbers at 2 years old was very common in autistic kids! We didn't need to wait to hear the official diagnosis a month later; we knew right then he had autism.

Unfortunately, the more comprehensive lists of symptoms can only be found on websites that are read mostly by people who already suspect their child is autistic. Those symptoms are not common knowledge and very rarely the TV shows and magazines will talk much about the most subtle signs. The stereotypical image of autism IS the severe end of the spectrum, and very few people in the world know what moderate to high functioning autism looks like. And that's precisely the reason why so many children are falling through the cracks and not receiving the early intervention that they need in order to develop to their full potential. If I'd known more about all symptoms of autism, I'd have been able to diagnose my son as early as 12 or 18 months old! Instead, by the time we found out, he was almost 3; by the time bureacracy allowed, he only started receiving special education for autism at 3 years, 2 months of age.

The fact that some kids are not obviously autistic to their families and peers will also make these children vulnerable to abuse. Parents will think they are defiant or inconsiderate; peers will call them dumb or crazy. So, as we're almost at the end of Autism Awareness month, I hope that more and more people are learning that autism is a spectrum where even the most "high functioning" individuals will have to face extreme difficulties and challenges, and will need a lot of support and understanding. I hope that more educators and therapists will be able to spot the early signs of autism so our children will have more time to "catch up" on their development.


MPJ said...

This sounds so much like my son (now 6). He was not speaking at 2, but was sweet and affectionate and always made eye contact with us (I think he avoided eye contact with strangers). I didn't think he could have autism. I thought he was just smart and shy with a speech delay.

The thing I learned well after my son was diagnosed that not pointing or waving by 12-14 months can be an early sign of autism. (My son was about 18 months before he did either.) I have since had friends whose children have speech delays, and I pass this tip on to them as something to watch for.

mcewen said...

I know what you mean [hit the milestones but miss the post]
Best wishes

Noetic said...

Thanks such a wise post, completely agree. And a very good point - the more in-depth information on autism, on the bits in between "completely dependent and nonverbal" and the Asperger's stereotype of a geek who monologues in a droning voice, that stuff is only to be found on sites were people who do not already suspect autism are unlikely to find it.

Very interesting about the pointing too, I was diagnosed with HFA 4 years ago (4 1/2 maybe) at the age of 25 and I too only started pointing around the age of 18 months (as evidenced by photographs taken shortly after 18 months, I didn't point before then and didn't point much after the initial "discovery").

There is a hilarious set of photographs of me and my godmother taken around that time - at first she is pointing upwards and trying to make me look to her window, where I presume my Mum or Dad were waving at me. But I'm too busy staring into the drain below me to even notice!

Then on the second picture I finally discovered my Mum up there and was pointing at her - but now my godmother is curious about what's down in the drain/gutter and is staring down there, missing my delayed imitiation! (Although to me pointing was more a way of saying "Hey, you!" than trying to get someone's attention.)

Tibetan Star said...

Hi there ;-)

I've enjoyed reading your post, and...

yes, I'm Portuguese - born in Africa and living in the UK since 93...

I'm glad you understand read Portuguese!

John Elder Robison said...

Yes, there is a very wide range, from people like me to those who do not speak at all and require assistance for most everything.

I wish we could look back in time to see how I really was at ages 2,3,or 5 to judge how other similar kids might end up now.

Anonymous said...

Would you mind posting the names of the sites that you have found that give the less "typical" symptoms such as those you found with your child?

Another Autism Mom said...

Anonymous, I'm sorry, I don't recall exactly what those websites were, because it's been about a year, and at that time I was frantically researching the web. That first day when I started reading about autism I must have gone through dozens of sites, including some that talked about hyperlexia and ADHD. What basically fit my son's profile to a "T" were symptoms such as echolalia (repeating what other people say rather than continuing the dialogue by responding to questions), lining up toys and having narrow interests.

If you suspect your child has autism you can look up sites such as Autism Society of America,, or your local FEAT chapter's website. FEAT stands for Families for Early Autism Treatment. There are also a number of British sites with lots of info on autism, I just don't remember at the top of my head but you may be able to find them easily on a Google search.

Another Autism Mom said...

Oh, and the NIMH and CDC sites also have a long explanation of symptoms that might be helpful. In any case, please share your concern with your child's doctor, talk to the school psychologist or other people in your community who might know a lot about autism. I happened to have a friend whose wife was an autism specialist and she confirmed by suspiscions.

Club 166 said...

While I agree that people need to be aware of all different manifestations of autism, I am much more relaxed about having missed "critical time" before 3 years old.

***This is purely personal opinion, as I have NO data to back this up***

I think that when it comes to developmental milestones, many things can't be rushed, and will only happen when the person's mind is ready to have them happen. You can optimize the conditions for things to happen, but can't push them 'before their time'. For instance, you can't teach a 6 month old to speak in sentences. It just ain't gonna happen.

Since autism is a syndrome which typically has developmental delay, many of the things that would have been happening probably couldn't have been taught earlier anyway. Their mind just wasn't ready to process that way yet.

Secondly, one thing that has been shown more and more is that people can and do learn over a lifetime, not just in a 'golden period' before age 3 or 5. Thus there is time to teach, facilitate, and learn.

Finally, there are many autistic adults that started as non-verbal individuals and developed just fine, without the benefit of all the ABA, RDI, Floortime, OT, PT, etc. In many cases they just had a family member help them. In other cases they just taught themselves. So all is not lost if a diagnosis comes at 3, 5, or 7 years of age, or even later.