Autism Chat with Experts (a recap)

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at AutismWonderland.

Last Wednesday Parents and Easter Seals hosted an autism-themed chat on the Parents Facebook page.

I was excited to be one of the hosts along with developmental-behavioral pediatrician Georgina Peacock, M.D., MPH of the  CDC and board certified behavior analyst Patricia Wright, Ph.D., MPH of Easter Seals. During our one-hour chat, we discussed the early signs of autism, treatment options and services, and I shared my own personal experiences parenting an autistic child. And readers participate by asking questions.
In case you missed the chat, I thought I’d give you a brief recap of commonly asked questions.
What was your first reaction when you received your son’s autism diagnosis?
I had prepared myself for Norrin to be diagnosed with autism. Throughout the evaluation process, I was reading and researching. But still hearing it from the doctor was still heartbreaking. It’s not the thing parents expect. But I knew I couldn’t allow myself to be sad for too long. Norrin needed me. (Lisa, AutismWonderland)
What are signs of autism?

Parents can use CDC’s “Learn the Signs. Act Early.” tools to check their child’s development - http://go.usa.gov/yVm.  Every child is different & develops at his/her own pace, but by learning the milestones, parents can recognize if their child has a developmental delay. If you have concerns talk to your child’s doctor.  (Dr. Peacock, CDC)

What is the first piece of advice you would give parents after their child is diagnosed with autism?

Build a community of support and gather quality information to inform your child’s treatment. Personally connect with those available to offer YOU support (family, friends, faith community). Share news of the diagnosis and let them support you. Gather information and immediately get your child enrolled in quality treatment. There is a lot of misinformation out there about autism – use quality sources for information gathering. The CDC (www.cdc.gov/ncbddd/autism/index.html), the Association for Science in Autism Treatment (www.asatonline.org/) and the American Academy of Pediatrics (www.aap.org) are great places to start learning about quality treatment for your child. (Dr. Wright, Easter Seals)

How do you explain autism on a child’s level?

Don’t make it complicated or over whelming. There’s a great book called “My friend with Autism” by Beverly Bishop – It’s perfect to help kids understand autism. (Lisa, AutismWonderland)

While the chat made me realize that people are aware of and curious about autism, there is still so much unknown. I was really inspired by many of the questions parents asked me – questions that deserve more than one or two line answers. Over the next few weeks, I plan on answering some questions (in greater detail) about our experiences with potty training, school advocacy and socialization. So please check back here or my Facebook page (AutismWonderland) and look for them.

And if you have a question about autism, that you’d like me to answer – please feel free to leave it in the comment section!

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  1. by Lauren

    On April 10, 2013 at 10:33 am

    Thank you for sharing the chat. I have a question.

    Gather information and immediately get your child enrolled in quality treatment.

    I hear this again and again and again. My question is, what is ‘immediate’, and how does the average family do this and not put themselves into bankruptcy?

    I live in one of the 13 US states (Washington) where insurance coverage for autism services is not mandated by state law.

    My 4-year old son received his diagnosis in November of 2012 and so far we have attempted speech therapy (he stutters) only to be cut off after 3 sessions because insurance wouldn’t pay, and are paying for social skills training and ABA therapy completely out of pocket.

    Meanwhile, my son will finally be assessed by the public schools in May, nearly six months after initiating the process, and if they diagnose him with anything he will begin developmental preschool in September, nearly a year after his original diagnosis.

    I feel like parents get some confusing info when hearing about how early intervention makes such a difference, because the reality is that early intervention comes at quite a price and is frankly not possible for many families. I’m not only talking the cost of therapies, either. Many double-income families go to single income after the diagnosis so one parent can be available to juggle all of the therapies, in-home changes, diet etc.

    We need to be more up front about the financial realities of an autism diagnosis and talk about it how families can help their child while not getting their house foreclosed on.

  2. by Kate

    On April 10, 2013 at 11:42 am

    my question is, why do you say that you did a chat with experts on autism without consulting the real experts – autistic adults? why are we always missing from the conversation?