Connecting Parents and Caregivers with Autistic Voices
Megan Amodeo is a writer, autistic self-advocate, and stay-at-home mother to three, 2 of whom are on the spectrum. Prior to staying at home with her children, she worked in special education. She currently writes for geekclubbooks as an “Autism Insider.” This week she shared her experience receiving a late diagnosis and the joys of being an autistic mom. » Read more
Lana Grant is a specialist advisor and advocate for people with autism and their families. Lana has worked within the field of autism for nearly twenty years. Lana specializes in autism and females, particularly pregnancy and motherhood. Her book “From Here To Maternity, pregnancy and motherhood on the Autism Spectrum” was published in March 2015 by Jessica Kingsley publishers and is the only book that focuses on this issue. Lana is a trained birth partner (doula) specializing in supporting pregnant women on the autism spectrum and their partners. Lana has recently contributed to the Scottish Autism Right Click Women and Girls Programme. She is a passionate advocate for female empowerment and speaks for the NAS and other organizations about female issues. She also has a diagnosis of Asperger syndrome.
This week Lana shared with me some of her background and advocacy work for mothers on the spectrum.
Motherhood has dominated my conscious thought lately (especially mothering infants) since the birth of my fourth child last week. Mothering a newborn brings both exceptional joys and significant challenges for neurotypical and autistic mothers alike. I hadn’t thought about the challenges unique to women on the spectrum until I interviewed Lana Grant who has written a book on this topic and consults with autistic women. She will be sharing some of her advice with us next week. Since then I’ve read more about this special stage of life and learned how it uniquely impacts women on the spectrum.
Halloween is a fun holiday to celebrate for both children and adults, and there are plenty of ways to help children on the spectrum enjoy this time of year. Some children may find it exciting to dress up and participate in spooky-themed activities while others are frightened by the new sights, sounds, smells, and feelings of this holiday. This article offers some ideas for planning an autism-friendly Halloween to help your autistic child or family member fully appreciate this fun holiday.
It’s crucial to acknowledge the voices and opinions of individuals on the spectrum and let their wisdom guide your advocacy approach. Despite our best efforts, parents can sometimes get comfortable in the daily identity of raising a child on the spectrum and forget to constantly reflect on parenting and advocacy approaches. Listening to the autistic community helps us gain our bearings and work productively to help our children develop.
It helps if parents are able to begin the school year by laying a solid educational support system for their children. This is especially true if it will be the child’s first year in a particular school system.
A friend of mine recently took her autistic 7th grader to a doctor appointment. During the appointment, the developmental pediatrician told her that after observing the behavior of her other 15-month-old son whom she had also brought along, this child was also on the spectrum. The doctor went on to recommend enrollment in a full-time ABA therapy program now if she didn’t want her baby to “end up like” her older son. My friend was shocked by this news and left wondering how best to proceed. The doctor’s aggressive unofficial diagnosis and recommendations left her worried that if she didn’t follow the orders, she would be failing as a parent.
You’ve probably encountered a well-meaning fellow parent who tries to offer a compliment or advice about your child, but leaves you feeling uncomfortable deciding whether to ignore it or politely educate them on autism or disability advocacy. Below are some cringe-worthy situations I’ve been in and suspect other autism parent advocates may also be familiar with.
There is a tendency for people on the spectrum to be portrayed as burdens to their families in the media. Sometimes this is the angle of the journalist reporting a story, and other times, it comes from the voice of a parent. Sometimes this narrative can even attempt to justify parent or caregiver murder of someone on the spectrum. Unfortunately, this portrayal has damaged public perception of autistic people, and many on the spectrum have spoken out against it.
This is an important step in hearing the voices of people on the spectrum. You will see how they are self advocating and what you are doing to either help or hurt their cause. I guarantee you will learn something.
The language of advocacy can have important consequences on your overall message. For example, learn about the difference between person-first and identity-first language and how the autistic people in your life choose to identify. Also be careful about using words like “cure” or “fix” or any language that only references what is negative about autism.
Sometimes a spark for change begins with a simple conversation. An easy and unobtrusive way to encourage conversation is by sporting neurodiversity gear. The colorful autism puzzle piece symbol is too vague (and even offensive to some) to promote autism acceptance. Instead, try finding promotional items specifically mentioning neurodiversity or autism acceptance.
Many parents and therapists aim to correct harmless stims in an effort to make an autistic person appear more “normal.” But these stims serve an important purpose in helping people on the spectrum regulate sensory input and organize functional behavior. Discouraging stims is often counterproductive to teaching desirable behaviors.
The pledge asks people to advocate only in panels, for organizations, and at events that meaningfully involve autistic people.
This article by Christine Miserandino helps depict the daily fatigue disabled people experience. This portrayal helps nondisabled people better understand and advocate for the needs of those on the spectrum.
This anthology will open your eyes and ears to the voices of people everywhere on the spectrum. It is written entirely by autistic people and discusses a variety of different advocacy topics.
ASAN is an organization aimed to improve disability rights related to autism. They offer advocacy resources to improve personal independence as well as advocate for policy changes on a national stage. Their motto is “Nothing About Us, Without Us!”
This is ASAN’s first published ebook. You’ll hear essays focused on autism acceptance and respecting the dignity and voice of everyone on the spectrum.
This website has loads of resources neatly organized into categories for parents, self-advocates, educators, and employers. Acceptance begins with reading and understanding more about the experiences, capabilities, and desires of those on the spectrum. This website has a variety of resources to serve this end.