HOUSTON – An autism diagnosis can be overwhelming and change everything in an instant.
"To hear it was so much to take in. I just felt like the world just stopped for a minute," said KPRC 2 meteorologist Britta Merwin.
This is a personal story for her. Her son was diagnosed with autism at 2 years old.
"Knowing that life was going to be, or really could be hard for him was just devastating as a parent to hear," Merwin said.
An exchange with a KPRC 2 viewer during Autism Awareness Month provided provided Merwin the opportunity to open up about her family's journey.
"For the past two years, I've worn my blue puzzle piece every single day of April, and every year I get a ton of emails and one woman emailed me and said, 'Thank you for supporting autism,'" Merwin said. "I wrote her back and said, 'For me, it's a personal journey for me too.'"
Dr. Sonia Monteiro works with children and families at the Texas Children's Hospital Autism Center. She helps parents understand the diagnosis and what comes next.
Monteiro said there are early signs of the disorder evident in a child's behavior.
"In terms of social skills, we find that they don't make eye contact as frequently. They might not respond when they're infants and, when their parents talk to them, they may not make sounds in response," Monteiro said. "From the communications standpoint, a lot of children have delays in their speech and language development, so they might not be using words by their first birthday."
Merwin said her son showed those symptoms. And other parents said they saw the same things, too.
Merwin recently sat down with a group of Houston-area mothers raising children on the spectrum.
Kendall Knight said her son showed signs of autism early.
"I knew from a very early age. Lots of crying when he was a baby. He was actually a really easy baby, but no eye contact, didn't want to do anything like roll the ball back and forth, didn't really play with toys," Knight said.
Steffani Erickson said her daughter Maddy also showed signs very early on.
"I knew something wasn't right -- the tantrums and the meltdowns. I would call her name over and over and she wouldn't answer," Erickson said. "She was empty. Her eyes -- she wasn't there."
For Joy Tober, the diagnosis brought conflicting emotions.
"There was relief because I had a path now," Tober said. "I knew I could go somewhere and get her the help that she needs. But it was scary too, because I don't know what her future is going to look like."
It's been two years since her son's diagnosis, and Merwin said she's learned so much about raising a child with autism.
She offers these three tips:
Trust your gut
"No one knows your child like you do. Early detection is key. The earlier you can start therapy, the greater chance you have of helping your child succeed and get over some of these challenges."
Make a plan
"Your child needs certain therapies and services to help your child and that's going to be individual to each child, depending on what your kid is going through."
Take care of yourself
"It's very easy to get burned out, exhausted, depressed and, if you are not ensuring that you're healthy, you're not going to be able to advocate for your child."
Monteiro said the diagnosis can be overwhelming, but with the proper treatment and therapies, there is hope for children on the autism spectrum.
"When I see those children who get plugged in to intensive behavior interventions and I see them come back, and I see the progress, I think it's probably the best part of my job," Monteiro said.
Therapy has been a game changer for Merwin's family. Recently, her son reached a huge milestone.
"He looked at me and he said, 'Hi, Mommy,' and he looked at me and said it, and I knew that he knew that I was Mama," Merwin said.
We've included a KPRC "Parent's Guide To Autism" Resources list below.
Texas Children's Hospital Autism Center is hosting an event for parents in July. See the information below to register for the event:
Introduction to Autism Resources and Services Workshop
Texas Children's Hospital Autism Center
Second Floor
8080 N. Stadium Drive
Houston, Texas 77054
The event will be held Friday, July 20, from 12:30 p.m.-3 p.m. To RSVP, leave a message with Jessica Smith at 832-824-8385 or email jhsmith@texaschildrens.org.
A new workshop has been added and will take place Friday, July 20, from 9:30 a.m.-12 p.m. It will take place at:
Texas Children's Hospital Autism Center
8080 N. Stadium, Suite 280
Houston, Texas 77054
Officials said parking in the lot is limited and reserved for patients. Street parking is available and there is a paid city of Houston lot next door that is attached to the Bureau of Vital Statistics at 8000 N. Stadium Drive. Parking will cost $6.
To RSVP to this workshop, click here.
Click here to watch the full video of the parents autism roundtable.
Click here to download KPRC's "Parent's Guide To Autism" Resources.
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KPRC "Parent's Guide to Autism" Resources
Before the Diagnosis
A Quick 5-Step Checklist
1. Ask your pediatrician for an autism evaluation.
2. If your child is 3 years old or younger, contact Early Childhood Intervention for an evaluation. If your child is grade school-age, contact your district’s special education department for an evaluation.
3. After you receive a diagnosis, ask your provider and/or school what services are available for your child.
4. Contact and interview possible therapy providers and make a plan for your child's treatment.
5. Contact your health insurance company to find out what is covered by your insurance. Reach out to local nonprofits if you need financial assistance.
Getting Your Child Evaluated
Medical evaluations, private therapy evaluations and school evaluations are all different and often are required by each provider before services are suggested and implemented. Evaluations take time. Plan ahead and be patient.
- For Early Childhood Intervention and other public school programs, the child must be evaluated by the school district even if the child has a medical diagnosis. If a child is under 3 years old reach out to ECI for initial evaluation.
- If a child is school aged, 5 or older, reach out to the school district for evaluation. ECI and public schools will require the district to evaluate a child before any services are offered and provided. Once evaluated and offered services these programs are free to children who qualify.
After the Diagnosis
100 Day Kit from Autism Speaks
Autism Speaks created a 100 Day Kit specifically for families of children recently diagnosed with autism to make the best possible use of the 100 days following the diagnosis. The kit is available in Spanish, and an Asperger's syndrome/high-functioning tool kit is also available.
Click to get a free copy of the 100 Day Kit from Autism Speaks
Advocacy Tool Kit from Autism Speaks
The Advocacy Tool Kit aims to help both individuals on the spectrum and their families develop and use critical advocacy skills in order to achieve the best possible outcomes.
Click to get a free copy of the Advocacy Tool Kit from Autism Speaks
Therapies Your Doctor Might Suggest
ABA
Applied Behavior Analysis is one of the leading therapies in treating autism. The therapy is the application of the principles of learning and motivation from behavior analysis, and the procedures and technology derived from those principles, to the solution of problems of social significance. For further information on what ABA is and what it looks like, click here.
Many other types of therapies might be suggested. For a full list and explanation of occupational therapy, physical therapy, speech therapy and many more therapies, click here.
Insurance and Health Care Resources for Children on the Autism Spectrum
Medicaid/CHIP: Link 1 | Link 2
School Resources for Children on the Autism Spectrum
Public School Resources
Evaluations from the school district are needed to receive services from the school district even if a child has a medical diagnosis. From kindergarten to 12th grade, the school will have meetings to help set up and implement education services for children who qualify.
ARD
"ARD" is an acronym for Admission, Review and Dismissal. An ARD is a meeting between parents, teachers, therapists, specialists and school district employees. In this meeting, an education program will be formulated for the student. Parents can have private therapists and advocates participate in ARD meetings but it is good form to notify the school of anyone a parent is bringing to an ARD meeting. Although many ARD meetings are annual, it is important that parents know they can call for an ARD meeting at any time. Before an ARD meeting ask to see the proposed Individualized Education Program, or IEP. This will allow extra time to go over the proposed education program for the student. If there are aspects of the program that should be improved or changed, speak up.
IEP
"IEP" is an acronym for Individualized Education Program. An IEP is a document that is developed for each public school child who needs special education. The IEP is discussed and finalized in an ARD meeting. It is developed by district specialists, therapists and teachers but above all, parents should be involved. It is important to participate in ARD meetings and speak up about what is in an IEP. This is a document that the school has to implement. It is imperative to have everything that a child needs in their IEP. Parents will be asked to sign off on their child’s IEP. It is important that parents know they do not have to sign an IEP until they are happy with the plan for their child.
Texas School Districts Offering Autism Services
Aldine I.S.D (Aldine Independent School District)
Alief I.S.D (Alief Independent School District)
Cy-Fair I.S.D (Cypress-Fairbanks Independent School District)
F.B.I.S.D (Fort Bend Independent School District): Link 1 | Link 2
H.I.S.D (Houston Independent School District)
Humble I.S.D (Humble Independent School District)
Pasadena I.S.D (Pasadena Independent School District)
Lamar C.I.S.D (Lamar Consolidated Independent School District)
Spring I.S.D (Spring Independent School District)
Katy I.S.D (Katy Independent School District)
Private Schools
Texas Children's Hospital Autism Center
The Texas Children’s Autism Center is a great resource filled with information on the following topics and more:
Local Nonprofits that Help Families Pay for Private School and Medical Bills
Texas Interest Lists
Included are a few links relating to Texas Medicaid Waiver programs in the state of Texas. It's incredibly important to call your local authority, which is based on your residential address/county you live in, and let them know you'd like to put your child on the Texas Home Living and Home and Community-based Services interest lists. The wait can be long.
You'll provide basic contact information and basic information about your child. The local authority will not ask for any documentation in order to put you on the lists. You should get a call yearly to ensure contact information remains updated, but that's about it. When the slot finally is available, you'll be notified by mail, which is why it's really important to keep contact information current.
Sometimes, reading through the resources can still be a little overwhelming when trying to understand what both Texas Home Living, or TxHmL, and Home and Community-based Services, or HCS, actually are. Briefly, they are programs that provide services to those with intellectual and development disabilities. The difference between TxHmL and HCS is that HCS includes funding for a residential component, such as a group home or a host home, which can also mean living with their own family, or paying for a staff member to assist the individual if they live independently but still need support.
These waiver programs offer a lot of services to support individuals with intellectual or developmental disability. The best thing you can do is get on these lists. You'll have plenty of time to learn about the programs while waiting for a slot to open up.
https://www.txdisabilities.org/waiting-lists
https://texasmedicaidwaivers.com/interest-lists/
Local authorities in Houston and surrounding areas::
The Harris Center -- 713-970-7000
County served: Harris County
Tri-County Behavioral Healthcare -- 936-521-6200
Counties served: Montgomery County, Walker County, Liberty County
Texana Center -- 281-239-1363
Counties served: Austin County, Colorado County, Ft Bend County, Matagorda County, Waller County, Wharton County
Gulf Coast Center -- 888-839-3229
Counties served: Galveston County, Brazoria County
Included in this link is a full list of all local authorities and what counties they serve along with contact information.