We have been very fortunate with Konner. He was diagnosed at three-years old. That is relatively early compared to many. We have been able to get him many of the tools to get his life on track, but there have been many struggles along the way, and we still have a long way. However, there is progress, he is doing well with his therapies, and we continue to work with him on them.
I can remember when we were worried about him talking. Everyone said, “Just wait until he starts talking you will want him to shut up.” I always said that this was not true. If he started talking we would be proud. I was right! I have never wanted him not to talk. It took so long to get to where we are that I would never stop him from that (however, some of the screaming could go away and I would be happy).
We know with anything that the sooner we begin working on a problem the sooner we will see results, or a solution. This is especially true with children on the Autism spectrum. There is already a delay in these children, but if we wait to diagnose and treat it we will only widen the gap.
This is due to the fact that there is a “window of opportunity” known by professionals and parents in the Autism world. This window closes and makes it more difficult for children to obtain the skills they need to function better in society. According to the Autism Spectrum Disorder Foundation (ASDF) website (http://www.autismspectrumdisorderfoundation.org/):
All of the comprehensive programs described thus far emphasize the importance of starting intervention when children are at the earliest possible ages. Generally, for children who suffer from moderate to severe childhood autism, there is a small, but vital, "window of opportunity" in which they can effectively learn. This "window of opportunity" exists approximately between the ages of 2 and 7.
Lytel has written a book that I’m going to borrow much of my information for this column from. This is because it is very easy to read, full of great information, and could be an owner’s manual for a young child with Autism. In her introduction she states, “This book is about how to recover from the blow of the diagnosis, implement an intensive early intervention plan, and find your voice as an advocate for your child.” These are all major points on the road to helping your child become as “normal” as possible.
I hate using the word “normal”, but we do want our children to have the same skills as other children, and let’s face it, that is what they lack, or they wouldn’t be autistic. So the sooner we can get them on that path the better.
According to ASDF, the average child is diagnosed at the age of four. With African Americans and Latin Americans that number goes up to eight and nine respectively. Other studies show that most parents notice issues with their children’s development around 15 months, but wait until much later to have a diagnosis done. Those numbers need to increase. I believe there are two reasons for this. One is the lack of knowledge about Autism, which is why I am trying to get as much out as possible. The other is denial. We can’t sit back and think our children are just slower at developing than others, and that they are going to “grow out of it”. This is only allowing that window begin to shut down, and making it harder to gain those important skills.
That is not to say that if you’ve waited past the seven years that it’s too late. Lytel says that “it’s never too early – or too late – to start an early intervention program if the red flags of autism begin to appear.” Let’s face it, at any point, the services we provide for our children are going to be productive. And don’t get discouraged.
The brain is a powerful organ. It has the ability to adapt to many things. There are people such as John Elder Robison and Temple Grandin who have adapted well to the world around them with minimal help. Robison didn’t even know that he had Asperger’s Syndrome until he was 40. By then he was a successful business man and an acclaimed engineer. However, both of them will tell you that they would have liked to have had the resources available today.
That ability to adapt is the reason you should never give up hope. Remember that any progress is positive, and should be used as a building block; or as Lytel puts it, “Any degree of success is success.”
With Konner we have seen many degrees of success. Those are thanks in part to the help of therapy. Konner currently has two sessions of occupational therapy thanks to the staff at the Gregory Kistler Center in Fort Smith, and three sessions of speech therapy thanks to Panama Schools and the Health Department.
With the speech, as I said earlier, we have seen his skills grown by leaps and bounds. He began speech therapy even before he was diagnosed with High Functioning Autism. He was seeing Sandra Slater at the Health Department at two-and-a-half years old. By the time he was three he was speaking. Granted it wasn’t a full paragraph, but again, any success is success.
We were once told by a “professional” that Konner would probably never pedal a tricycle. However, thanks to the occupational therapy he can ride a bicycle (with training wheels, but it’s way past where we were told).
It is important to make short term goals so that you can reach these objectives and have a sense of triumph.
Disclaimer: I am in no way claiming to be an expert. I’m just a father who is trying to learn as much about Autism as I can to help my child. I hope that you all can learn from me, and I from you. I ask anyone who has questions or comments about something I have written, or autism, please contact me at firstname.lastname@example.org. I will try to answer questions as I have time, and if I find it interesting enough I may touch on it in my column.