We are a family affected by autism – our oldest daughter is on the spectrum. She wasn’t diagnosed until 14, when a very perceptive therapist suggested that we have her evaluated. Our girl is chatty beyond belief and extremely social. Our lack of understanding of autism meant that we chalked subtle signs – inconsistent eye contact, sleep trouble, and what seemed to be an immature awareness of social graces and nonverbal cues – up to quirks of personality. Surely someone SO outgoing couldn’t be on the spectrum! Even her pediatrician and speech therapist missed it.
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April is “Autism Acceptance Month.” Autism, or Autism Spectrum Disorder, ASD, refers to a range of conditions that usually show up in children as challenges with social skills, speech, nonverbal communication, and repetitive behaviors. Previously called “Autism Awareness Month,” the autism community is calling for a shift in language to “Autism Acceptance Month” in order to “foster acceptance and to ignite change through improved support.”
In 2020, the CDC reported that approximately 1 in 54 children in the U.S. is diagnosed with autism. It’s important to know, though, that there is not one profile of a person who is on the autism spectrum; and when parents aren’t educated, they may miss some of the signs in their children, as we did. You are just as likely to encounter someone that is able to live independently and may not even be perceived to have autism as you are to find someone on the other end of the spectrum – an individual requiring intensive support to live his or her daily life.
Children with autism usually exhibit symptoms by age 2 or 3, but even infants may show early signs of autism. Boys are four times more likely to be diagnosed as girls and autism affects all ethnic and socioeconomic groups.
According to Autism Speaks, an organization dedicated to promoting solutions for the needs of individuals with autism and families, the sooner intervention begins, the better the possible outcome for your child, so it is important to seek a professional evaluation if:
- Your baby shows few big smiles and little to no eye contact by 6 MONTHS
- Your baby engages in little or no back-and-forth babbling and few or no smiles by 9 MONTHS
- Your baby shows little or no response to his or her name and little or no babbling by 12 MONTHS
- Your toddler speaks very few words by 16 MONTHS
- Your toddler speaks few or no two-word phrases by 24 MONTHS
AT ANY AGE, be on the lookout for:
- Loss of previously acquired speech, babbling, or social skills
- Avoidance of eye contact
- Strong preference for solitude
- Difficulty understanding other people’s feelings
- Delayed language development
- Persistent repetition of words or phrases (echolalia)
- Resistance to minor changes in routine or surroundings
- Restricted interests
- Repetitive behaviors (flapping, rocking, spinning, etc.)
- Unusual and intense reactions to sounds, smells, tastes, textures, lights and/or colors
Now that we know that our daughter is autistic, it’s like the world has subtly shifted. Instead of reacting to some of her behaviors or things she says, we experience them with understanding and acceptance. We’re better able to support her needs in our daily lives and to advocate for support at school.
I understand the desire for a shift from “Awareness Month” to “Acceptance Month,” but for our family – and likely for many – what is needed is both awareness and acceptance. Awareness that autism is not one size fits all. Awareness that symptoms can be incredibly varied so an evaluation is warranted if there is a possibility that it might be autism. Children with autism experience increased rates of bullying, anxiety, and depression. If parents can catch the diagnosis earlier, then the right support can help mitigate some of the struggles that our children will go through. Early intervention also helps with learning, communication and social skills, and underlying brain development.
And, acceptance must also be a part of the picture. People with autism don’t need to be “fixed.” Every human being wants and deserves to feel accepted, for exactly who they are. This April, please pause to learn more about autism – to become aware – and please consciously extend acceptance – to everyone – because there is no one face of autism. With 1 in every 54 children being diagnosed, and many more undiagnosed, extending acceptance and kindness to all is now more important than ever.