Before I start this post, I want to be clear that my knowledge about autism spectrum disorder was very low 3 years ago. Since starting my job, I have learned so much. I now “see Autism everywhere". Obviously it helps that we live it as well! I would also like to acknowledge that I know everyone does their best and that this post is not a criticism of anything, except maybe the system.
At work, we often see grade 12 students who our screens “scream" autism. Sometimes I wonder how a child gets to be 17 before anyone suggests that ASD could be a possibility. The diagnostic criteria has broadened so much in the last years that the kids we grew up with that were “quirky" or “weird" or “loners" would likely get the diagnoses in today’s criteria.
But let me tell you a story. I would love know where you give up and accept what everyone is saying and ignore your gut feelings. Or do you make it all the way?
Your very cranky infant develops feeding challenges. They blame your milk supply and acid reflux. You attend regular groups at the local Child Development Centre but no one offers help as your baby screams through group or when you struggle with nursing. Until you are hospitalized. Then you get referred to every team at the CDC. They give some suggestions but really you are doing most of it already so they tell you to just stick with it. At some point you ask if they think that maybe someday, you will get some sort of diagnoses. They say no, if anything, its some attachment challenges due to the feeding challenges.
You celebrate your baby's first birthday at BC Children’s Hospital. Here you learn that your baby appears to be developing normally despite being diagnosed as “failure to thrive” due to feeding challenges.
At some point, someone suggests Autism Spectrum Disorder. You do some screens and baby scores in medium or high risk. You ask your daycare what they see. They tell you that they don’t normally tell parents if kids are developing differently or slower than peers because some parents don’t react well to this news. However, they humor you and do an autism screen. Baby comes back medium to high risk.
You ask your pediatrician about Autism and bring all the reasons why you think this, having done some research. The pediatrician tells you that they know autism (the boy in the waiting room who also has other challenges, that is autism. Your child is not).
You ask your family doctor about Autism and to make a referral. He tells you that all toddlers are autistic.
You request and receive a new pediatrician. Again, clearly not autism. This pediatrician lists half the symptoms your own research tells you are signs of autism in toddlers but says it is not autism.
You tell the CDC that you wonder about Autism. They agree to put someone at daycare one hour a week to observe. For a year, this person says the behavior can still be explained by being a toddler.
You consider paying $3500 for a private assessment. You still need someone to sign the referral document. You are told by the CDC that you will be wasting your money at this time.
You meet with a Speech Language Pathologist. They say your child doesn’t have red flags. You tell them all the reasons you believe your child to be different. But they say wait and see.
You beg for and get one meeting with an Occupational Therapist. They do not see anything you say happens in that hour.
You tell your friends that you think your child is different. They tell you that you are over reacting and everything is fine. Stop worrying. Now you wonder if you have made your child different by trying to convince the world that your child needs an assessment.
Finally, 20 months after you first question if this is autism, someone hears your reasons and says “maybe".
Meanwhile, you keep seeing more and more things. You keep bringing up autism at meetings. You keep pointing out the new developments.
This might be a good time to point out that publicly funded Autism Assessments have a 2.5 year waitlist. Referrals for an Autism Assessment can come from 3 sources: family doctor, pediatrician or Speech Language Pathologist.
Have you made it this far? Have you accepted that you are crazy and pushing a “disability” on your child? Do you feel like a terrible person? Or are you sure and confident in your beliefs?
The ONLY reason that we were able to get a diagnosis at the age that we did is because my family doctor knew that my team has a good reputation for understanding Autism. He said “I will refer because of where you work but I don’t think it is autism".
It is no wonder that kids make it to 17 without ever hearing the word Autism. In our world, unless you have big “meltdowns" no one acknowledges you. If you are not well connected and knowledgeable and willing to fight for your kid, you don’t stand a chance. If I did not work where I do, I might not have had so much fight either. So working where I do got us the referral we needed (despite it being done to shut me up) and gave me the tools to get us what we needed. If I didn’t work where I do, I am not sure we would even be on that 2.5 year waitlist yet. Would anyone have told me that my child played differently? Would anyone have listened to me? I remember feeling like such a failure that first year. And then I was told it was attachment damage. I felt even worse. She was called a spirited little shit by a pediatrician.
I get why people cant win in this system. I am thankful that we did.
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