Henry and Mom
Dr. Amanda Smith, mom of 7-year-old Henry who was diagnosed with autism at age 3, answers questions in this Q&A interview about her own personal experience identifying and living with a child with autism. Autism Awareness month is April. Click here if you have more questions or want information on autism. Each diagnosis is a different story and this one is Henry’s journey.
Q: How did you first notice that Henry might be autistic? How old was he? What was the diagnosis process like?
A:
“When Henry was 18 months old, we went to his pediatrician for his 18-month check-up, and he was not meeting his age milestone for speech/how many words he should be saying by that age. Henry was referred to Burke ECI (Early Childhood Interventions) for speech therapy. Over the next year, he received therapy with a wonderful speech therapist at Burke but was not making progress.
“After he turned 2, I noticed he was constantly walking on his tiptoes. I spoke to his pediatrician about it, and Henry’s ankles and tendons were checked to make sure it wasn’t a muscular issue. He was deemed fine and was told to continue to observe him and try high-top shoes to support his ankles.
“Between the ages of 2 and 3, Henry started having behavior outbursts and meltdowns as if he was overwhelmed by crowds and sounds. These had never bothered him before. He also started engaging in repetitive tasks, such as putting a toy in a drawer, closing it, opening it, and putting another toy inside, repeating this process for hours.
“Before he turned 3, Burke ECI referred us to Lufkin ISD for speech therapy testing. By law, school districts must take over services when the child turns 3. I requested the school also test him for autism because the repetitive tasks, tiptoe walking, and sensory overload were all signs of autism.
“At the same time, his pediatrician agreed with my concerns about possible autism and referred Henry to Texas Children’s for medical testing. However, there was an 18-month wait when I called to set up his appointment. The school must conduct an independent test for autism because it is an academic test, different from medical testing. We were referred for both school and medical tests.
“Lufkin ISD was able to get Henry set up for testing for school identification, and he was identified as moderate to severely autistic, which would impact his learning. He started school that fall when he turned 3. We never ended up going through with the medical testing at Texas Children’s due to Covid. His pediatrician went ahead and diagnosed Henry as a child with autism.”
Q: What have been some of the biggest challenges and joys?
A:
“Some of the biggest challenges were finding what worked for Henry. Sounds overwhelmed him, but he didn’t want to wear headphones at first. Now we can’t get the headphones off him at school, so teachers have to yell when they instruct him. He tends to run and bite when he doesn’t want to do something, so we’re constantly on guard, fearing he might run in front of a car. He has no understanding of the danger. It was difficult finding a daycare that would accommodate his behavior. He dropped out of three different daycares before starting school full time.
“Some of the greatest joys were the first time he said ‘Mama’ and used sign language to communicate with his teachers. He’s almost 8 years old now and still doesn’t speak verbally most of the time. He’ll say a word or a phrase every now and then, but he’s mostly non-verbal.
“We were recently invited to a birthday party, and he participated the entire time without wanting to leave, having a meltdown, or running away. This had been years in the making, and it was such a relief to watch him interact with other children. It wouldn’t have happened without a community that understood and still invited us, even knowing we might have had to leave shortly after arriving.”
Q: What are some misconceptions about autism that you’ve experienced?
A:
“That non-speaking doesn’t equate to intellectual disability. Henry has a high IQ, but it’s often challenging for others to recognize this in their interactions with him. When he throws a fit because he’s overwhelmed by a crowd, he may appear to be a spoiled child having a tantrum, but he’s truly struggling to process the noise and sensory overload. It’s not that we shouldn’t include him in everything because it could overwhelm him; rather, we constantly try to include him in events and activities, even if they overwhelm him at first, because otherwise, he would stay at home and do nothing his entire life. We must continually find what works best for him—whether it’s using headphones, taking breaks, or limiting exposure times—so that he can lead as independent a life as possible. Sometimes, life experiences are taken for granted by others, and it’s essential to understand that not all autistic individuals respond the same way to situations. Not all autistic people are like Sheldon from ‘The Big Bang Theory.’ Autism is a spectrum disorder, so there’s a wide range of developmental delays and responses to stimuli.”
Q: What does Lufkin ISD do best for students with autism?
A:
Lufkin ISD provides access to resources and therapies. Thanks to grants and trained individuals, our students benefit from expensive text-to-speech software, allowing autistic students to have a voice. Students have access to sensory rooms, motor rooms and a wide range of options to try, to see what works best for their sensory and behavioral needs. Henry hated headphones, but thanks to his teacher’s dedication, he now loves them, and it has helped so much with his behavior. He also hated weighted lap blankets but now seeks them for comfort.
“Lufkin ISD employs caring staff who understand their students. Several teachers have special needs children of their own so they teach as they would want their child to be taught.”
Q: Are there any support networks you recommend to other parents with autistic children?
A:
“Facebook autism parent groups have been a great resource in understanding that our experiences are shared by a large portion of the population. There are posts every day asking for suggestions and recommendations about potty training, brushing teeth and dealing with picky eaters. Locally, there is Reach Behavior Therapy in Lufkin that offers behavior therapy for children on the Autism Spectrum. The Helping House, in Nacogdoches, is a private school for students on the Autism Spectrum and their Director is always happy to help anyone with questions. TAG Therapy, in Nacogdoches, provides various therapy options for children with autism. Elijah’s Retreat in Jacksonville is a “sanctuary for families facing autism”. The owner’s grandson, Elijah, was diagnosed with autism and they wanted to create a safe place for families to bring their loved ones to relax and rejuvenate together as a family. They offer horse therapy, cabins for camping overnight and lots of sensory activities specifically designed for autistic individuals.”
Q: What message would you like to share with others during Autism Awareness Month?
A:
“There is no one right way to appreciate and support autism awareness. Sometimes, people get so deep in their feelings about how they want others to spread awareness that it becomes a debate and argument instead of focusing on what matters. So whether you are pro-puzzle piece symbol or pro-infinity symbol, #LightItUpBlue or #WearRedInstead, whichever side of the coin you are on, the point is to give everyone a voice (whether verbally, text-to-speech, sign language, etc) and strive to grow stronger as a community. To help each other in our battles and know that you’re not alone in your struggles. Autism is a spectrum disorder and doesn’t affect everyone the same. There is no “one-size fits all” model that works and we’re all figuring it out as we go. I’m not an expert, I just know what has worked for my son, and that I couldn’t have done it alone.”
Q: What advice would you give to other parents who are having similar experiences with their own children?
A:
“Take your child to the milestone check-ups with their pediatrician. Those appointments made a difference in our journey and in finding other specialists, like a dentist, who specializes in helping children with special needs.
“School districts can test students at 3 years old for suspected developmental delays. Even if you’re not sure that your child will qualify, it’s better to find out and get help early. It has taken 5 years for Henry to make significant progress in his speech therapy and we started when he was 18 months old. Not every autistic child is non-verbal, but any early interventions can make a huge difference in children’s lives.”
Huge thanks to Dr. Amanda Smith for answering questions about Henry’s journey. She is employed with Lufkin ISD as a Digital Learning Specialist.