When a parent hears the word “autism” from a trusted source, so many things go through your head, most of them bad. As the parent of two children on the autism spectrum, I can take you through my experience, if ony to help those of you struggling with the diagnosis or who may suspect that something isn’t quite right. For those of you who may suspect an autism spectrum disorder in your child, I will highlight the major red flags that indicate that there may be a problem.
When my son (now 16) was about 2 years old, he started to develop extremely rigid thought patterns. It was obvious in everything he did. He wanted things to be a certain way and by God if I didn’t do them that way there would be a tantrum the likes of which I’d never seen. I’d never seen in any of the typical children that I knew. I thought maybe he was just fussy and liked things the way he liked them. I really never thought much of it.
Right before the age of 2, I also began to notice some abnormalities in socialization. I will never forget when I signed him up for a class at Gymboree. While the other children were playing together and sitting nicely for “circle time,” my son would have none of it. He wouldn’t sit, he would not socialize, and he kept doing the same thing over and over and over, which included running over a little “bridge” that was in the Gymboree room. Over and back, over and back, over and back. And you couldn’t speak to him because he seemed to be out of touch to the point where you think he may be deaf.
I also noticed that he would often take similar objects and line them up end-to-end from one end of the room to another. While many typically developing children do the same thing, the way in which he did it made me think something was amuck. If I dared to move one thing out of place, again, the tantrum from hell. And I’m not talking about a minute-long tantrum, I’m talking hours of torture. Other parents of children with Autism Spectrum Disorder (ASD) often have horror stories to tell of the massive melt-downs associated with the disorder.
When he was a bit over 2 years old, I knew that something was wrong. Children of similar age were playing with one another, while I painfully watched my child isolate himself in a corner repeating the same tasks over and over and over again. And more importantly – he was not talking by the age of two. Some children are late talkers, and I dismissed it as such, but as time went on and there was no language, it became increasingly clear that something was not quite right. At this point, I took my son to the pediatrician who confirmed my suspicions. I didn’t exactly have the best interaction with my pediatrician that day. He said (and I quote), “I think he may have autism, come back in six months.” I now know this to be a common practice with pediatricians. If they tell you to wait… DO NOT WAIT. You have a small open window and believe me, you want to get a diagnosis and get therapy start as soon as possible. The earlier, the better.
We made an appointment with the Evaluation Unit at Children’s Hospital of Pittsburgh. Unfortunately, at that particular time there was an 8 month wait to get our son evaluated. We waited (not very patiently) for our turn for a diagnosis. He was diagnosed with autism around the age of 2-1/2.
Another red flag to point out is that the child attempts to communicate with you, but cannot use words to do so. This often involves the child taking the parent by the hand and leading them to the object they want, and pointing at it.
Other red flags include:
- Either not responding to loud sounds or substantially reacting to loud sounds
- Covers ears when overstimulated
- Does not acknowledge you when you say his or her name
- Plays with toys inappropriately, such as lining cars end-to-end instead of playing with them as a car (vroom)
- Does not want to play with other children
- Continually isolates
- No eye contact
- Does not imitate others
- Walks with an unsteady or odd gait
My advice for parents who suspect that something is wrong will probably NOT be what your pediatrician tells you. After 12 years of working tirelessly in the autism community, addressing the PA State Health & Human Services Committee, helping to get laws passed to protect individuals with autism, and supporting children and families, I still cannot fathom how or why pediatricians seem to continually miss the diagnosis. It happens every day. If you know in your heart that something is just not right — here’s what I want you to do, regardless of age:
- Call the Allegheny County program for Early Intervention – Early intervention specialists such as speech therapists, occupational therapists and behavior specialists will be dispatched to your home, free of charge, to conduct standardized evaluations on your child. They will even come to your home. If your child is found to have significant deficits in any one of these areas, they will provide weekly therapy services to your child in your home at no cost.
- Call a local autism organization – And I do mean local. Do not call national organizations, they are of zero help in this situation. They collect money for research, and nothing more. In my opinion, the best organization is ABOARD. They are staffed with parents of children with autism who know the system inside and out. They are patient and will explain in plain English the steps you need to take to help your child.
- Get a diagnosis – Do not wait. Go now. First, I would advise you to call the Children’s Hospital Autism Center and get on the waiting list. But don’t wait – see someone else in the interim in order to get your services started earlier. Save the Children’s Hospital appointment for later. Linda M. Gourash, MD – Can Diagnose and also Dr. John Carosso at Community Psychiatric Centers. (He is affiliated with the Autism Center of Pittsburgh and they have an office right on Cumberland Rd.)
As a sidebar – I was so disenchanted with the entire process of having my son diagnosed, that I started a nonprofit organization called “The Autism Center of Pittsburgh” about 12 year ago. I wanted to ensure that no parent ever had to wait again to get a diagnosis when they knew that something was wrong. I am no longer with the Autism Center, but now there are now dozens of places where you can get a relatively quick diagnosis, in order to get services started sooner. If you need to get an appointment quickly in the North Hills, call Dr. John Carosso’s office at Community Psychiatric Centers – they can get you in relatively quickly.
Since I not only have two children on the autism spectrum and was a leader in the Pennsylvania Autism Community for over a decade, you can email me with ANY questions that you might have if you suspect your child has autism. I will ALWAYS answer you, because I’ve been there and I know what it’s like.
Don’t despair – there is help and it WILL get better, I promise. And please, if you are going through the same process or have a child with ASD, register below and comment on the thread. I’m interested in what you have to say!