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Deafness and Autism: My Son Is the Needle in the Haystack

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Many people in the autism community have heard of Dr. Stephen Shore’s quote, “If you’ve met one person with autism — you’ve met one person with autism.” Autism is a spectrum disorder that manifests itself differently across individuals. I am going one step beyond Dr. Shore’s declaration by distinguishing a small but increasing segment of the autism community.

“If you’ve met one person with autism—you haven’t met any with deaf autism.”

The most recent statistics determining the national average of children with autism in the United States is 1 in 68. Within that number, there is a growing number of deaf/hard of hearing children who find themselves caught between two worlds. My 6-year-old son is one of those children caught in limbo; a member of two communities, but belonging to neither.

For deaf autistic children, the ability to communicate is strongly affected by the combination of not being able to hear what is being said, accompanied by limited verbal skills, which is characteristic of many children with a single diagnosis of autism. I learned that my son Kameron is deaf when he was 9 months old. His audiologists educated my family about cochlear implants, so we opted to have his right ear implanted first. I also began a quest to learn sign language. Even after a couple years of early intervention, he did not make any progress. He experiences sensory issues that resulted in an inability to wear the external components of the cochlear device.

On his second birthday, I discovered that he is deaf and autistic. His language is currently very delayed. At 6 years old, most typical developing kids are speaking full sentences and reading simple words. Many non-verbal autistic children are experiencing success with communication devices and tablets. Similarly, many children who are only diagnosed as deaf are using sign language. I can’t say that my son fits into any of these categories.

Communication or Assistive Technology (AT) devices require the ability to point and manipulate buttons or navigate different screens. Kameron has difficulty with finger isolation, which makes using an AT device as a mode of communication ineffective. In order to build a strong sign language vocabulary, a child must have strong imitation skills. Currently, Kameron does not have the imitation skills necessary to use sign language as a primary mode of communication.

His limited communication skills tend to alienate him from other children. He doesn’t have playmates that are not relatives or close family friends. Even those relationships are a bit forced, as he cannot share in their conversation and interests. He can’t utter the words “play with me.” A game of catch is more of a therapy session in turn-taking and imitating, contrived by an adult. Almost every step he takes during the day is shadowed by an adult, who must stand within several feet to ensure his safety.

Modes of communication is a hot topic among speech language pathologists (SLPs), behavior analysts and special educators. For children who are deaf and autistic, choosing a primary mode of communication is doubly challenging. Education programs and school placements are built around modes of communication; however, when a child does not fit nicely into one of the modes, the result is an educational program that lacks the adequate resources and programming options.

When my son turned 3, the “team” (not me) made the choice that a half-day Deaf and Hard of Hearing (DHH) program was the best placement for him. After my request for a mediation hearing, we compromised on the DHH class in the morning and class for children with autism in the afternoon. There was no one like my son in either of the classes. In fact, there was no precedence for deaf autistic children. The research is limited. The resources and programming options for children like my son do not exist. He is the needle in the haystack.

So, how does my family manage in a world not designed for those who are deaf and autistic?

Day by day, just like everyone else. Our outings may require a bit more planning and thought. One person has to be the designated aide to follow my son throughout the day. Not every activity can be modified for my son’s enjoyment, but we try to make adjustments when we can.

After several years of him struggling to wear his cochlear device, he now wears it every day. Through determination and strong advocacy skills, I was able to find a suitable educational placement where he is beginning to make progress. He is still the needle in the haystack, but his team is very accommodating and progressive in their thinking and approach to education. In terms of receptive language, he understands some simple directions such as “clean up toys” or “go bathroom” that I usually pair with my voice and a sign/picture. He can consistently respond to his name being called. He can wave “hello/goodbye.”

I still long for him to speak so I can hear the words, “I love you mommy,” but he is a master of facial and body expressions. He is affectionate and absolutely loves hugs. His face lights up when he sees me. Sometimes I am all that matters to him. To many others these things may seem basic, but they mean all the world to me.

Originally published: July 20, 2016
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