by Kathryn Jones
There are so many stories about Autism. Sometimes parents, family and friends get overwhelmed and want to tune it out. I admit, it can be sad and scary; but it can also be inspiring, uplifting and beautiful. Many stories about autism start out the same. “We knew something was wrong right away.” “My baby would not look at me or cuddle.” “My child looked healthy, he just didn’t talk, and the doctor told me he’s fine.” “It took years to get a diagnosis even though we knew it was autism, we were still devastated.” “We were told my child would never talk, never go to school, wear diapers until adulthood, she would never have friends, never marry, never show love, and have to be in a special home.”
That is scary and sad to think about. Yet, that isn’t the ENTIRE STORY, not by any means. Some parents of kids with autism call this “Cocktail Party Autism Awareness.” Whether it is associating colored puzzle pieces & ribbons with autism, or lighting something up blue once a year. But that’s not real AWARENESS, and until we really become autism aware, we cannot celebrate autism acceptance as a society.
One of the best ways to raise real awareness is through very personal stories from parents about their autism journey. This is why I want to share Noah’s story of hope. So more people can recognize autism and actually help to accommodate people on the spectrum. I want more people to understand that an individual’s autistic challenges don’t diminish their worth as human beings. I want legislators, teachers and insurance companies to stop denying people with autism the right to an appropriate education, medically necessary therapies and access to community services.
It’s the conversations from these stories that can make a real difference. And here is ours:
From my early concerns of developmental delays when Noah was a baby that were scoffed at by doctors, therapists, friends and family… to Noah’s official diagnosis of autism at age three… I spent years struggling to understand autism, while also discovering my son needed therapy that was being unethically denied. Then having to pay out of pocket for denied therapy – and by that folks, I don’t mean hundreds, or thousands, not even tens of thousands, I mean more. As in: take out an extra mortgage, cash out the pensions, the 401ks, the IRAs, borrow money from family kind of out of pocket costs. And finally to NOW, when we can celebrate the hard work and advocacy that will allow not just Noah, but many other families to access effective therapy through their private insurance companies!
These personal stories and parent advocacy are MAKING A DIFFERENCE! In fact, I won our appeal with Premera to cover ABA therapy for Noah! It’s been a four-year battle, but we succeeded. This would not have been possible without help from Arzu Forough, Trish Thrush, Mira Posner and all the staff at WAAA (Washington Autism Alliance & Advocacy) who tirelessly provided me with insurance advocacy support & no cost legal services, in an effort to overturn years of denials from Premera for medically necessary treatment that our little Noah so desperately needed.
In addition to ABA (Applied Behavioral Analysis), we have now gained unlimited access to speech and occupational therapy for Noah past the age of 7! This is a direct result of a class action lawsuit settlement between families represented by WAAA attorneys and Premera Blue Cross to remove age limits and treatment limitations from any medically necessary speech, occupational and physical therapy. The change applies to all insured plans issued by Premera and its subsidiary LifeWise in Washington state. The settlement has also set aside $3.5 million to reimburse policyholders who paid for therapy out of pocket. To all my friends and family who have followed our journey of autism and hope, I am so happy to share this BIG WIN!
From the beginning, when I would vent about the emotional and financial struggles of autism – to those who listened, responded, or offered a caring ear, I thank you.
In the thick of it, when I would share Noah’s milestones and achievements, when I spoke of Noah’s teachers blazing a trail to make accommodations for kids on the spectrum, my endless Facebook posts on nutritional discoveries, sensory therapeutic advances, modified teaching applications and testing – to those who read my posts and offered encouragement, I thank you.
And today, for any friend who has a family member with medical needs that are being denied, I hope this part of our journey will inspire you to seek advocacy. To those of you who have donated and shown your support to WAAA, I thank you.
To anyone who still wishes to support this wonderful organization in Noah’s name, you can follow this link. Even a $10 or $20 donation will help. This cause is very important. WAAA’s advocacy and legal achievements are changing insurance coverage policies and making families aware of their rights.
"It is never too late to expand the mind of a person on the autism spectrum. You always have to keep persevering." – Temple Grandin