A lot of people have asked how we came to the realization to have Peanut evaluated for Autism. Because so many symptoms overlap between Down Syndrome and Autism it can be scary and difficult for parents to tell the difference.
It’s important to notice the early signs and speak to your doctor about them. We got very lucky because her Pediatrician is a developmental specialist and works with children with special needs. He was able to point out things we hadn’t really noticed and encouraged us to have her evaluated fully.
One major flag we noticed was how often Peanut will sit and play repetitively with random objects. Her favorite is clothing. She will sit and “sort” clothing (any cloth material really) for hours and hours if we allow her to. Something that we thought was adorable, became a huge red flag.
Yesterday I was able to record her doing this repetitive play. You’ll see she focused constantly on putting her ring toys into a small teacup. There is no reasoning, there is no joy, there is just repetitiveness. At the time of my recording, she had already been doing this for about 30 minutes. She continued for about 30 more. I try to engage with her, ask to have a ring or even put the ring in the cup myself. But nothing breaks her from this trancelike play. She ignores me, maybe looking my way a little, but for the most part is content with this action.
So what is the issue with this? If you check out this article Learning to treat repetitive behaviors in autism
Intense interests often interfere with a child’s ability to socialize, because other children cannot relate to them, leading to further isolation.
If we allow Peanut to continue in the repetitive play, she can become so focused on it, and miss out on other opportunities.
She also has the tendency of bringing her hands up to her face when she is anxious or stressed. Someone pointed out that it looked like the hug emoji. It seems like a cute, sweet way to describe what she is doing, but we’ve learned that this means she is starting to feel overwhelmed or tense. It’s these non-verbal cues that have helped us prevent Peanut from having full meltdowns when she is struggling with the environment around her.
During infancy or toddler years you may see:
- Repetitive motor behaviors (fingers in mouth, hand flapping)
- Fascination with and staring at lights, ceiling fans or fingers
- Extreme food refusal
- Receptive language problems (poor understanding and use of gestures) possibly giving the appearance that the child does not hear
- Spoken language may be highly repetitive or absent
(source: Down Syndrome and Autistic Spectrum Disorder: A Look at What We Know)
Peanut often puts her face as close to the lights on her toys as she can get. She focuses on the flashing lights and colors. She can go one day to the next and refuse to eat the same food. It’s not even a taste issues. It’s purely a dislike for the food in general. This even happens sometimes with her all-time favorite food, french fries. It is very difficult to get her to turn our direction when we call her name. She also does not wave hi or bye, blow kisses or point to things she wants. Lastly, when it comes to language, she is almost fully non-verabal. The few words she used to say pretty often have regressed and she is now down to Mom, Dad, No and “I done.”
As you can see, the signs for Peanut having Autism have been there from the beginning. Often times, even typical children will fall into these red flags randomly. But if you feel like your child shows multiple signs, pretty consistently, you might want to speak with a specialist about further testing.
It is very difficult to come to terms with the fact that our children might have more obstacles to overcome. I had an extremely hard time when we received our Autism diagnosis. But our job as parents is to help our children become the best the can be. Sometimes that means, accepting things we do not want to hear, and relying on a specialist to help guide and direct us when things are wrong.
We’ve heard comments like “Isn’t she already receiving therapy? So whats the point of the second diagnosis?” Well, the point is huge! She does receive plenty of therapy for Down Syndrome, now she will gain therapy that focuses fully on Autism. ABA (Applied Behavior Analysis) is a very intense, daily therapy that will help her function in day to day life. This will focus on all aspects of her day from eating, playing, learning and handling stressful situations. Without this specialized therapy, her progress can delay even more.
The most difficult part (apart from acceptance) is research. Currently, there is very little information on Down Syndrome ASD dual diagnosis. Because of the overlap and common traits, it is still difficult to determine a cause. Even recently we were approached to participate in an early Autism diagnosis research program, only to be told her Down Syndrome status automatically disqualified her. So currently my job has been to not only continue educating myself in Down Syndrome but also in the Autism Spectrum Disorder as well. By doing this, I can hopefully understand the best way to help Peanut grow and develop.
To the parents of a possible duel diagnosis child, please do not get discouraged. It is scary, it is overwhelming, and yes, it is heartbreaking. But as I’ve said before, you are not alone!! There are support groups for this situation and other families who can help guide you through it. Hang in there!!