Raising Justin—and Awareness Alexis Alston changed her professional and personal focus to advocate for her son with autism. E-luminations
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E-luminations  |   August 01, 2016
Raising Justin—and Awareness
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Special Populations / Autism Spectrum / E-luminations
E-luminations   |   August 01, 2016
Raising Justin—and Awareness
The ASHA Leader, August 2016, Vol. 21, online only. doi:10.1044/leader.EL.21082016.np
The ASHA Leader, August 2016, Vol. 21, online only. doi:10.1044/leader.EL.21082016.np
Shortly after my son, Justin turned 10, we sat down with his psychologist, who leaned forward and said, “OK. I’m going with Asperger’s.”
I finally received a formal diagnosis for my oldest son—autism spectrum disorder (ASD). I felt relieved. We sat in this same office two years earlier, but his doctor wanted to see if Justin’s social skills would develop, so she didn’t offer a diagnose then. As a speech-language pathologist (SLP), I spent eight years leading up to this date trying to figure out what was going on with my son—although I suspected autism—and get him appropriate services. I felt like I’d won the lottery just to get a diagnosis.
As an infant, everything appeared normal with Justin’s development. As an SLP, I waited eagerly for him to meet all the milestones, and he did! I never noticed his unchanging facial expressions as I looked lovingly into his beautiful face day-after-day. I never thought much about our difficult diaper changes or his sensitivity to food textures, loud noises and touches.
First suspicion
Once Justin started daycare, summer camps and preschool, however, I started getting daily calls. A director of one daycare said, “He’s the most difficult child we’ve ever had.” All we heard were similar complaints: “He’s so difficult,” He won’t follow rules,” “He won’t listen,” “He’s a danger to other children,” and finally, “He can’t attend here any longer.” What do you do when your child can’t participate in activities like other children? It was so frustrating.
ASD was still new in the early 2000s and educators working with Justin focused solely on his behavior. They wanted to refer him to special education for a serious emotional disability, but I refused. I stopped running away from bad situations and began working toward convincing the school to educate my child. It was his right.
I changed my work situation and left the medical setting for a school, so I was close to my son. I wanted to see what happened on a daily basis. I quickly realized his school didn’t know how to handle Justin, so I took him to every medical professional I could—autism specialists, neurologists, applied behavior analysis therapists, speech-language, physical and occupational therapists. In addition, we tried every available school option from neighborhood to magnet to charter to private. By the time Justin entered 6th grade, he was enrolled in his 7th school.

ASD was still new in the early 2000s and educators working with Justin focused solely on his behavior.

Outside support
Fortunately, we got some guidance along the way, which helped me understand what treatment he needed, even without a formal diagnosis. Justin’s second grade teacher, Laura Hidreth Barr, first recognized his needs in 2007. She’s the reason we got his 504 plan. He made significant progress that year thanks to her. I also took Justin to the Charlotte, North Carolina, TEACCH Center. They also suspected ASD, but had a long waiting list for appointments to go through the evaluation process.
A couple of years later, that wonderful teacher called to check on Justin and tell me about the new elementary school where she now worked. She invited me to visit, so I went to meet with the principal—who’s also an SLP. The principal believes in bringing together children with all types of learning differences and welcomed Justin (as well as my other son with severe attention deficit-hyperactivity disorder) to her school. Thanks to the help of this teacher, principal and school, we finally found appropriate placement for Justin and his first IEP—for “other health impaired.”
Starting that fifth-grade year, Justin received speech-language treatment along with occupational therapy and counseling services through his IEP. I worked closely with his teachers on strategies, gave them resources and made visual support materials for Justin to use in class. I also developed a “Justin in a Nutshell” sheet describing his strengths, interests and dislikes. The page also listed his top 10 inappropriate or unusual behaviors, along with 15 challenges and strategies to help solve them.
Continued advocacy
The spring of that same year we finally got the diagnosis. Not long after, I linked up with the parent autism resource specialists at the Autism Society of North Carolina (ASNC). They offered me additional resources for home and to share with his teachers at school.
A year later, when Justin started middle school, my ASNC advocate did an in service for Justin’s school. I put together a similar tip sheet for middle school like I had done for previous teachers. Eventually, I also developed a strategy portfolio for transition to high school. It’s a constant process of educating the teachers and advocating for Justin, but we are a success story!
Justin entered 11th grade recently and is taking all honors classes—including French IV—with special education support services and speech-language treatment to support his pragmatic language impairment. He maintains a 3.3 grade point average. He plays football, he can travel away from home without a parent, and he’s beginning to self-advocate. He also got his driving permit.
I remain his biggest advocate, however, and each year we start over with the new teachers. It’s an ongoing journey, but I don’t do it alone. I encourage all parents to use existing resources. You don’t need to fight the battles alone. And you never have to believe what they tell you about the limitation of your child’s education.
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August 2016
Volume 21, Issue 8