So you think your child has Autism
If you found this post then you may be experiencing a wide range of emotions. Let me start by saying – it is okay to feel how you feel. Please don’t feel guilty if you are anxious, worried, or even sad about the possibility that your child may have Autism. You are not alone.
This post is based on my experience with my son and is not representative of all children with Autism. Characteristics vary greatly among people with Autism, but there are some characteristics that are fairly common.
Autism characteristics I saw in my son (15-18 months old)
Delayed Speech
Around 15 months old I started to notice that my son was not saying as much as his peers. He had probably 3 words, but rarely said them spontaneously (on his own). Usually he only said them if we were trying to get him to say them. He would wave and say bye-bye if we prompted him to do so. I started to think at this point that he may have a speech delay, but I had not considered Autism.
Around 18 months old, my son had 3-5 words, but again they were usually not spontaneous and he only said them when we encouraged him to. At his 18 month appointment (he was actually 20 months old) I talked to the pediatrician about his speech and we filled out the MCHAT. This was the first time I heard the A word – all about that here.
Around 2 years old my son stopped talking all together. He would occasionally repeat a word when we encouraged him.
My son is almost 5 now and verbally says one word (Mama). With extensive speech therapy and ABA, he is communicating with PECS and starting with an AAC device.
Lack of Social Interaction
My son lacked consistent eye contact from around 12 months old. Even when we said his name, he would only look at us about half the time.
He did not imitate our actions or facial expressions.
He did not participate in joint attention, where both of us could share attention with a toy or object together. I learned about this concept early on with speech therapy.
He never pointed at anything in interest or requesting an item. He would hand lead me to something he wanted, but never pointed.
Repetitive Behaviors
My son loved to run in circles and do repetitive actions like dumping out buckets of toys and filling it back up over and over.
Indifference to Toys and Pretend Play
My son did not play with toys in an expected way. He would spin the wheels on toy cars, but not pretend to drive them.
My son loved (and stills loves) water play. If there is water, he will find it and thoroughly enjoy it. He also loves playing with sand, dirt, and rocks.
The first few actions to take if you suspect Autism
First, take a breath and understand that this is a marathon, not a sprint. As parents, we want to do everything in our power to help our children, but this process will not be fast or easy. Remember that your child was made perfectly and try to enjoy time with them without putting too much pressure on yourself or them to be perfect. I also spent a lot of those early days feeling like I needed to be his therapist. While there are many benefits actions you can take at home to help their development, remember that you are still their parent and they need you to be their parent. Have fun with them and don’t feel the pressure to be constantly teaching them.
Next, talk to your child’s pediatrician. You can use an upcoming well child visit, but don’t wait if that is months away. Call the office and set up time to discuss your concerns.
Depending on the age of your child, the pediatrician may refer you to a state program for early development. In my home state of Kentucky this program is called First Steps. My son started at 20 months and the program ends at 3 years old when it is expected they will go to preschool.
The pediatrician also made a referral for an Autism evaluation. We waited on that waitlist for about a year before deciding to go to a private pay provider to get an evaluation. This is a provider that does not accept insurance and just bills clients directly. Another 6 months passed before I got the call from the referral.
Usually, you must have a diagnosis to get into preschool on the basis of a disability and to qualify for therapy services. If you are waiting for an Autism diagnosis and your child is young, you can get a diagnosis of Developmental Delay (DD) from your pediatrician. For us, that qualified my son for preschool and therapy while we waited for the Autism diagnosis to be official.
If your area is anything like mine, then there are probably long waitlists for therapy. Go ahead and do some research on the type of therapy that you are interested in and get on the waitlists for your local providers that are in network for your health insurance.
Research any state Medicaid or waivers your child may qualify for and try to understand the process. I won’t lie to you, this is the biggest headache and emotionally draining part of the process for many including me. In Kentucky we have the Michelle P. Waiver for people with intellectual and developmental disabilities. The waitlist is years long so it is important to try to get on it as soon as possible.
You know that breath I told you to take as step 1? Let that breath out. I felt like I held that breath in for 2 years. I held it in as I waited and wondered what my son’s life was going to be like. I still don’t have all the answers, but I am filled with hope about the future.
