Neurology Now:
doi: 10.1097/01.NNN.0000453339.35327.1a
Departments: Letters

Alexis Wineman

Lopez, M

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Tempe, AZ

As the mother of two children with autism (ages nine and 11), I am concerned that you put too pretty a face on autism in your cover story on Alexis Wineman. Most of us are in the weeds dealing with so many specialists: neurologists; epileptologists; behavioral, occupational and speech therapists; nutritional therapists when sensory disorders leave our children unable to eat enough to sustain a healthy weight; and developmental pediatricians. Then there are the state coordinators—gatekeepers for services—whom we fight to determine how much we'll be paying out of pocket; and specialty compounding pharmacies; and the insurance companies that never cover enough. We deal with moving to find a better school district (three now) or the private schools that take half of our combined income when the public schools fail. We have meetings that cover things like when exactly the school is allowed to call the police on your 11-year-old autistic daughter for having a self-injurious tantrum in her special education class before calling you.

Don't forget the isolation from your friends and family because you can't really go anywhere or do anything and your children can't handle being out of their home environment or the increased stimulation of having anyone come over with their children. And your friends want to talk about taking the kids to swim practice or baseball and soccer games, but you have no stories about sports, to say the least. Your stories are things like, “Joey ate apple sauce today without vomiting.”

Presenting autism as something that my children just need to try really hard to overcome so that they, too, can be “normal” isn't helpful. My son is non-verbal at nine years old, even though he had early intervention from 19 months of age and has continued therapy his entire life. He's been trying. My 11-year-old daughter is verbal, but her sensory and behavioral needs are extreme. She was diagnosed at 26 months and has had the same intensive therapeutic schedule as my son. Miss Arizona is probably not in her future, although she is gorgeous. I wish it were as easy as your article made it seem.

After reading Neurology Now for approximately a year, I was happy to see an article on autism, but disappointed it was so candy-coated with a message that might leave the public thinking the affected just needed to buckle down and get over their symptoms. I have met countless families like mine in therapy environments. We are the new normal when it comes to autism. Educating the public about a typical autistic family would help others understand what we're dealing with when they encounter us struggling in public. Although I am pleased for Alexis and her family, it is so much more than that for so many of us.

M. Lopez
Tempe, AZ

© 2014 American Academy of Neurology

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