Is My Toddler Autistic?
My Toddler is Speech Delayed, Is it Autism?
My first child was a girl. She hit all of the developmental milestones right on schedule, if not early. Of course, for your first child you track these milestones carefully by reading all the books and signing up for all the Baby Center emails. Then my second child came, a beautiful boy. We were so happy to have both a girl and a boy. As everyone knows, your second child gets a lot less of the hoopla. We didn't even blink an eye when at 8 months he wasn't even attempting to crawl. He was such a happy baby. He was content with just having his favorite toys beside him and he would play quietly for hours. he smiled all the time and it did not take much to make this kid laugh uncontrollably. I couldn't believe how easy this kid made it for me. My daughter demanded ever ounce of attention from birth until now (almost 5 years old). I used to brag to others about what a good baby he was. At 11 months, he finally started to crawl. My friends children who were the same age, were already pulling themselves up and taking their first steps. A couple months went by and no signs of standing or walking for that matter. Still, I didn't worry, he was just a little slower than most. My husband and I even joked around with each other saying "he must take after your side of the family" At 15 months, I started to worry. We made a visit to the pediatrician and he did not seem worried. He told me that if he wasn't walking by 18 months we would re-visit the issue, he is just taking his time. I felt relieved and by 16 months my son started walking.
I took my soon to his 18 month wellness appointment with his Pediatrician. I was looking forward to gloating about how he was finally walking. During my visit, I mentioned to the Pediatrician that it just seemed like he did everything a little slower than others and that he still acted like an infant and not a toddler. He was not babbling or pointing, but he was very engaged, made good eye contact, played with toys appropriately, and laughed when you were silly with him. Was I being oversensitive? Afterall, I was comparing him to my little girl at home who did everything early. The doctor listened to my words carefully. he then brought out a checklist called M-CHAT (Modified Checklist for Autism in Toddlers). Yikes, this made me nervous. He asked me questions such as, does he ever point, imitate you, or respond to his name most of the time? I answered No to the above questions. There were several questions on that check-list I responded positively to however, there were many that my son was not doing. The doctor informed me that 3 "wrong" answers meant he did not pass according to the check list and it warranted a referral to the Early Intervention Program at the Regional Center in our county. He also wanted me to pursue a Hearing Evaluation to rule out hearing problems as that can be attributed to speech delay. I began to panic. I called my husband crying and said "I think our son is autistic". Of course that brought panic to him as well.
One Month later we found ourselves going through the intake process with our local Regional Center. They asked us questions over the phone and said they wanted to schedule an Assessment with our son. Prior to the Assessment I spent hours on the Internet looking up autism stories, symptoms, treatment, etc...I found thousands of sites about autism and most of them had the same information. Nothing I saw convinced me that my son had autism. Yes, our little guy was delayed with some milestones, but other than that he was perfectly normal. He made eye contact, he smiled at funny things, and he played with toys appropriately. I became hopeful again. Family and friends were divided. Some would say "oh relax, boys take longer to do things" or "he's not even 2 yet, don't worry". Other's gave you the sad face when you explained what was going on, especially when you mentioned the word autism. I started to become worried that if I started telling too many people about these events, that he would be labeled "autistic" and always be viewed that way regardless. I decided to keep quiet about our upcoming assessment until we knew more.
On the day of the Assessment with the Regional Center, we found ourselves nervous and doing all we could to ensure our son would perform his best at the Assessment. The Assessment took about 2 hours. We were in a small room with a Pediatric Neuropsychologist anda case manager. I could tell they were strategically playing with him. As a parent, you find yourself making excuses for your child when he didn't follow instruction or would throw toys, or cry for no reason. You so desperately want your child to be viewed as "normal" and you make yourself crazy. Once the assessment was done we all went over the scores and observations. I was told my son was a visual spatial learner which means he thinks in pictures rather than words. For expressive communication he scored at 12 months (he was 19 months old at time of assessment). For receptive communication he scored 6 months. In the areas of Cognitive and Motor he scored right around his age group. We were pretty shocked to learn that he was that far behind in communication. I asked the Doctor and Case Manager if they thought he was autistic. They talked a lot, but never answered my question exactly. In the end they said they could not answer my question because he was too young. They recommended Speech Therapy one time per week through the Regional Center and again inquired about his Hearing Evaluation which was scheduled in two weeks. We thought we would be leaving the Regional Center knowing if my son was autistic or not. Frustration begins.
The hearing evaluation was certainly an experience. It was performed at Children's Hospital Oakland. My husband and I both attended. They brought us back to this very small dark room which my son did not like. They tried to put ear phones on my son, which he kept taking off. After several more attempts the audiologist gave up on that and decided to switch to speakers on both sides of us. By this time my son was so agitated you couldn't get him to cooperate for anything. At the end of the evaluation, I was sweating, my son was crying and my husband was overwhelmed due to the total chaos. The audiologist said we think there is a mild hearing loss, but we can't be sure. bring him back again in another month. He would later have another hearing evaluation that was inconclusive. We would not bring him back again. Frustration level rises.
At 20 months old, speech therapy once per week started. The first few sessions, I felt like my son had an adult play friend. The Speech Therapist would come in with a bin full of toys and would play with my son. I am not quite sure what I was expecting, but I thought it would be more skillful than what it was. I started to ask questions of the therapist about his observations with speech delayed kids and about certain signs. He gave me responses that I was not expecting. I got a lot of "I don't know" and "I'm not quite sure". I finally asked him how long he has been a therapist and he said "I just graduated'. Frustration level up another notch.
After 4 months of speech therapy we were not seeing a lot of progress. My son was approaching 2 years old and I felt like we were going nowhere fast. I had been told by the speech therapist that by age 2 a child should be saying 50 words or more and using 2 word combinations. Well, that was real bummer. My child was saying only a couple words at best. I felt defeated right then. Finally, right after my son had his 2nd birthday we finally started to see some signs of communication. He started pointing at the things we wanted (remember he should have started doing this at 1 year). Because of his prior hearing evaluation results, I scheduled an appointment with a Pediatric ENT at Children's Hospital. Yet another person to poke at my son. I figured this specialty see speech delayed kids all the time. Maybe he could help us. He recommended Myringotomy Tubes (ear tubes) and felt his communication delay was due to fluid in the ears. He said "imagine being underwater, that is how your son hears sound. He felt confident that our son had ear infections and just didn't have the normal symptoms other kids have, i.e. fever, irritability etc...I thought no way, if he had ear infections I would know it. The ENT said "did you know he has an ear infection right now?" Of course I did not because my son was his normal happy self. We thought this might be the answer. This doctor went as far as to say "your son is not autistic". He told us that many kids do not talk until almost 3 years old for all kinds of reasons. This was the best Pediatric ENT in the Bay Area, of course we clung to his every word.. We scheduled the surgery for the following week.
Ear Tube procedure went off without a hitch and we continued with once per week speech therapy. We decided to approach our case manager and our therapist and discuss the lack of progress. Our son did not seem to be benefiting from this once per week speech therapy. This is when I really took the role of advocate for my son seriously. I needed to drive his care because if I left it up to a recent grad and a case manager that probably had a case load of hundreds, we would be stuck in this non progressing state. I inquired with his Case Manager about increasing therapy. This is when I heard about ABA therapy (Applied Behavioral Analysis). ABA is a mixture of psychological and educational techniques that are utilized based upon the needs of each individual child. This therapy is intensive and is 5 days per week. Therapy is provided in a facility setting (preschool) and the child also gets Speech Therapy twice per week. When I researched ABA therapy on the Internet I saw the work "Autism" on each website. That feeling of sadness struck me again. Is he autistic? Why would they recomment this intense therapy if he is normal? After much discussion andmore research my husband and I really felt like our son could only benefit for intense therapy, whether he was autistic or not.
We decided to bring our Pediatrician back into the mix so we made our 2 year wellness appointment. The Pediatrician carefully listened to us about all of our concerns. As we spoke he observed our son for about one hour and he really felt like he did not exhibit the major characteristics of autism. He did however feel there is something going on that is causing these significant delays. We asked about his thoughts about putting our son in ABA therapy. He did not know if our son needed that intense of a program, but he didn't think it would hurt him either.
At 2 years, 1 month we started our son in ABA therapy. It took him a while to warm up to the teachers and the school. After three weeks he stopped crying and started working. We could not believe the progress we were seeing. Our son started to imitate words, identify pictures, and showed the desire to learn all in a matter of two months. We knew the therapy was a big part of his progress, but we also knew he had the tubes in for several weeks now and he just turned 2 years old which in itself is a milestone in development. It was difficult to determine why the big and sudden turnaround. The school and therapy were just fantastic and we were so glad we made the decision to sen him there. Still, we could not stop being our child's advocate. The goals the therapists outlined for him were unacceptable to me. I knew he was capable of much more. I had to challenge their evaluations and goals and worked with them to set new ones that were attainable, but challenging.
I write this story because I know the frustration and anxiety of not knowing what, if anything is wrong with your child. I have been the parent who one minute believes their child exhibits autistic characteristics and the next minute believes there is no way. There are limited resources and support for the child that MIGHT be autistic. The Internet provides little relief to a worried parent as the signs and symptoms on the websites are often vague. I have witnessed many non-autistic children exhibit some of these behaviors. For whatever reason, parents bring a lot of anxiety to themselves. I believe this is because society judges you as a parent If your child is not walking by 12 months, or talking by 15 months, or doing math by the time they are 2 (kidding about the last one). Experts establish milestones for child development, but I have to wonder about some of them. I think a lot has changed in development, maybe due to the environment or maybe something else. I think it is time for these developmental milestones to be reviewed again. Experts told us that our child should have a vocabulary of 50+ words and use two word combinations. I don't know any 2 year old boys that say 50 or more words. I think that is incredible and can not be a coincidence.
Do I think my child is autistic? I really don't know. In my heart, I do not believe he is autistic, but something is causing this communication problem. He continues to make progress everyday, but we have a ways to go. We have definitely ruled out a hearing problem as he can hear Mickey Mouse starting on TV from two rooms away. I am trying to learn more about visual spatial learning and I am sensing some sensory processing issues (no pun intended). He loves to play with his sister and most older kids. He does not engage with peers as much, but I believe that is the age. He loves to laugh and and be silly and initiates games. He smiles at people and I believe is a very social little guy. He is growing his vocabulary, but still has difficult initiating words. He instead waits for you to say it and then he will repeat it. He will initiate when it is something he really wants. I know there are parents out there who are in limbo just like us. If you feel in your heart there is something not quite right about your child, don't ignore it. Many possible diagnoses, like autism, will come up and it can be a lengthy and frustrating process. My child has been through 2 hearing tests, ear tube placement, 6 evaluations by different doctors and therapists, and we still do not have definitive answers. I encourage you to tap into your local Regional Center, it is free, and worthwhile. Early intervention will only help you and your child. It will never hurt them. Please also remember that as the parent, you are the ONLY real advocate for your child. Empower yourself to challenge the health care system, ask lots of questions, and do not get discouraged no matter what happens. Our children have something to say and we need to find the tools to help them say it.