April 2020 Featured Interview
Interview with
Valerie Paradiz, Ph.D.
Author and Vice President of Services & Supports at Autism Speaks
Photo Courtesy: Autism Speaks
About Valerie:
Valerie Paradiz, Ph.D., is the Vice President of Services and Supports at Autism Speaks. A person with autism and the parent of an adult son on the spectrum of autism, Valerie is the author of numerous books and articles relating to advocacy, education and services, including Elijah’s Cup (Simon and Schuster), the Integrated Self-Advocacy ISA Series (Center for Integrated Self-Advocacy) and Lesson Plan a la Carte (AAPC). Recent publications include Home Truths, a column for the Simons Foundation Autism Research Institute’s (SFARI) Spectrum News and “Essential Self-Advocacy and Transition” in Pediatrics.
In previous roles, Valerie has served as co-founder and director of the ASPIE School for middle and high school students with autism, Director of Education of New York University’s Asperger Institute, Director of the Autistic Global Initiative (a division of the Autism Research Institute), and Director of the National Leadership Institute of First Place Arizona.
Valerie’s work in autism and the neurodiversity fields has been featured in the New York Times, The Guardian, NHK Japan, MTV, the PBS NewsHour and National Public Radio. She is the 2015 recipient of the Autism Society of America’s Adam Heavener Memorial Award for promoting successful employment of individuals with autism.
In addition to her efforts in the autism and neuro-diverse community, Valerie is a literary writer with numerous publications in narrative non-fiction, short fiction, and German literature in translation.
Valerie Paradiz, Ph.D., is the Vice President of Services and Supports at Autism Speaks. A person with autism and the parent of an adult son on the spectrum of autism, Valerie is the author of numerous books and articles relating to advocacy, education and services, including Elijah’s Cup (Simon and Schuster), the Integrated Self-Advocacy ISA Series (Center for Integrated Self-Advocacy) and Lesson Plan a la Carte (AAPC). Recent publications include Home Truths, a column for the Simons Foundation Autism Research Institute’s (SFARI) Spectrum News and “Essential Self-Advocacy and Transition” in Pediatrics.
In previous roles, Valerie has served as co-founder and director of the ASPIE School for middle and high school students with autism, Director of Education of New York University’s Asperger Institute, Director of the Autistic Global Initiative (a division of the Autism Research Institute), and Director of the National Leadership Institute of First Place Arizona.
Valerie’s work in autism and the neurodiversity fields has been featured in the New York Times, The Guardian, NHK Japan, MTV, the PBS NewsHour and National Public Radio. She is the 2015 recipient of the Autism Society of America’s Adam Heavener Memorial Award for promoting successful employment of individuals with autism.
In addition to her efforts in the autism and neuro-diverse community, Valerie is a literary writer with numerous publications in narrative non-fiction, short fiction, and German literature in translation.
Myrna Beth Haskell, executive editor, had a conversation with Valerie about her personal journey and the female experience of autism.
Females on the spectrum are often diagnosed later in life – into their teens and even adulthood – and you are no exception, having been diagnosed in your early 40s. Looking back, do you think there were struggles or challenges you faced growing up that could have perhaps been mitigated had you received early intervention?
I think things would have been different if my family had known. When I was a younger child, no one knew about autism in the schools. I can describe a memory…well, it’s really much more than a memory. Second grade was a harrowing year for me. I was extremely aware that I was completely unable to speak to others at school. Today, they call this selective mutism. I was so confused about what was happening to me…not being able to access my words.
The positive side was that I was going to a Catholic school where there were small classes which were very structured and also heavy on academics. This was a good environment for me. Academics became a coping mechanism to navigate the social environments in school. It was a way for me to hold it together. In middle school and high school, I was in public schools and was known as the nerd – the smart one. My sisters were popular, and their popularity helped me socially. It was like I was riding their coattails. Everyone knew them, and I was part of that family dynamic. I was also able to mimic what they did in social situations.
If I had received more support for the autism early on, I probably wouldn’t have had years and years of depression that began in the fifth grade and continued for years.
What are some of the difficulties many females on the spectrum face in the workforce and how can they overcome them?
There are two things that I’d like to share. The first is to learn the skills you need to advocate for yourself on the job. Women on the spectrum need to think about what they need to navigate the political environment at the workplace. For instance, I worked at Bard College as an adjunct for 13 years. I was a single mom working on subminimum pay, even though I had a Ph.D. and was published. I wasn’t aware that I needed to build political relationships. I didn’t have the ability to form the networks…I avoided faculty meetings because they were hard for me to navigate. So, it’s extremely important that women develop self-advocacy skills so they can ask for help in this area.
The second thing needed is a mentor - someone who can help you interpret and navigate relationships…to help you learn who to trust.
What about specific challenges for women when it comes to romantic relationships?
This is very tough for me. In light of the 'Me Too’ movement,* I’ve been looking at the past and writing to understand things. I wrote a stage play that is being adapted into a screenplay. It’s about a young woman in her 20s who doesn’t speak, but every other character that interacts with her speaks. She’s in a bad situation with her employer – classic ‘Me Too.’ But you don’t know she is autistic…she could be any woman.
It’s not just about finding your voice…it’s about having the ability to speak out, to advocate for yourself. It’s about functional communication and an ability to protect yourself from abusive relationships. It’s about embracing that it is your right to be treated well at work.
All women struggle with this, but it is exacerbated for those with autism.
* The Me Too Movement is a movement against sexual harassment and sexual assault of women. #MeToo is used throughout social media for women to share their personal stories.
Are you aware of any resources or support groups specifically for women?
There’s more capacity for this in community-based settings, but social skills groups vary from community to community. There’s Felicity House in New York City. [This is a free social community space just for women with autism who gather to meet, to socialize, to pursue interests, to learn, to create, to connect to other resources, etc.] There’s also AWN (Autistic Women and Nonbinary Network) which provides support and resources for autistic women, girls, nonbinary people, and all others of marginalized genders.
As Vice President of Services and Supports at Autism Speaks, I would suggest that readers reach out to our Autism Response Team.* You can call a toll-free number, email or chat live to receive information about community-based resources and programs in your area. [Team members are available between 9am and 5pm in all time zones. Live chat is also available between 9am and 5pm EST. Your call will be routed to the team member for your region. Autism Speaks also has a dedicated Spanish language toll-free number.]
*Autism Response Team (ART) at Autism Speaks: This is an information line for the autism community. Team members are specially trained to provide personalized information and resources to people with autism and their families, such as where to get a diagnosis, schools and special education, advocacy and support, community activities and adult services, including post-secondary programs and employment.
Females on the spectrum are often diagnosed later in life – into their teens and even adulthood – and you are no exception, having been diagnosed in your early 40s. Looking back, do you think there were struggles or challenges you faced growing up that could have perhaps been mitigated had you received early intervention?
I think things would have been different if my family had known. When I was a younger child, no one knew about autism in the schools. I can describe a memory…well, it’s really much more than a memory. Second grade was a harrowing year for me. I was extremely aware that I was completely unable to speak to others at school. Today, they call this selective mutism. I was so confused about what was happening to me…not being able to access my words.
The positive side was that I was going to a Catholic school where there were small classes which were very structured and also heavy on academics. This was a good environment for me. Academics became a coping mechanism to navigate the social environments in school. It was a way for me to hold it together. In middle school and high school, I was in public schools and was known as the nerd – the smart one. My sisters were popular, and their popularity helped me socially. It was like I was riding their coattails. Everyone knew them, and I was part of that family dynamic. I was also able to mimic what they did in social situations.
If I had received more support for the autism early on, I probably wouldn’t have had years and years of depression that began in the fifth grade and continued for years.
What are some of the difficulties many females on the spectrum face in the workforce and how can they overcome them?
There are two things that I’d like to share. The first is to learn the skills you need to advocate for yourself on the job. Women on the spectrum need to think about what they need to navigate the political environment at the workplace. For instance, I worked at Bard College as an adjunct for 13 years. I was a single mom working on subminimum pay, even though I had a Ph.D. and was published. I wasn’t aware that I needed to build political relationships. I didn’t have the ability to form the networks…I avoided faculty meetings because they were hard for me to navigate. So, it’s extremely important that women develop self-advocacy skills so they can ask for help in this area.
The second thing needed is a mentor - someone who can help you interpret and navigate relationships…to help you learn who to trust.
What about specific challenges for women when it comes to romantic relationships?
This is very tough for me. In light of the 'Me Too’ movement,* I’ve been looking at the past and writing to understand things. I wrote a stage play that is being adapted into a screenplay. It’s about a young woman in her 20s who doesn’t speak, but every other character that interacts with her speaks. She’s in a bad situation with her employer – classic ‘Me Too.’ But you don’t know she is autistic…she could be any woman.
It’s not just about finding your voice…it’s about having the ability to speak out, to advocate for yourself. It’s about functional communication and an ability to protect yourself from abusive relationships. It’s about embracing that it is your right to be treated well at work.
All women struggle with this, but it is exacerbated for those with autism.
* The Me Too Movement is a movement against sexual harassment and sexual assault of women. #MeToo is used throughout social media for women to share their personal stories.
Are you aware of any resources or support groups specifically for women?
There’s more capacity for this in community-based settings, but social skills groups vary from community to community. There’s Felicity House in New York City. [This is a free social community space just for women with autism who gather to meet, to socialize, to pursue interests, to learn, to create, to connect to other resources, etc.] There’s also AWN (Autistic Women and Nonbinary Network) which provides support and resources for autistic women, girls, nonbinary people, and all others of marginalized genders.
As Vice President of Services and Supports at Autism Speaks, I would suggest that readers reach out to our Autism Response Team.* You can call a toll-free number, email or chat live to receive information about community-based resources and programs in your area. [Team members are available between 9am and 5pm in all time zones. Live chat is also available between 9am and 5pm EST. Your call will be routed to the team member for your region. Autism Speaks also has a dedicated Spanish language toll-free number.]
*Autism Response Team (ART) at Autism Speaks: This is an information line for the autism community. Team members are specially trained to provide personalized information and resources to people with autism and their families, such as where to get a diagnosis, schools and special education, advocacy and support, community activities and adult services, including post-secondary programs and employment.
|
“Elijah has toddled off into a small examination room adjoining the doctor’s office. He’s always going off into the next room, and I’m always going there with him. Away from all the people and their speaking voices, off to solitary islands of unheard-of shapes and sizes. Like the island hammock we went to at a friend’s house last week. We had been invited to a spring picnic and decided to get out of the house for a while, but Elijah remained a measured distance from all the party guests, preferring to be alone.” (Elijah’s Cup) |
When you were raising your son, Elijah,* what was your biggest parenting challenge? Do you feel that you were able to communicate with him and dissect his view of the world because you were also on the spectrum? Are there specific challenges for autistic parents who are parenting a child on the spectrum?
I have several friends who were in a similar situation – a person on the spectrum parenting a child on the spectrum. These parents have insight into their child’s experience that non-autistic parents may not have. However, this can also be an obstacle. Parents on the spectrum may not seek outside supports. They might easily engage with and understand their child’s special interests, but social learning could be a problem. A child may miss out on opportunities to engage with others [because his/her parent is less comfortable seeking these types of activities]. |
|
My biggest challenge was definitely isolation. This is a theme in the autistic community. Your child who is struggling is experiencing isolation, and you’re isolated in that experience with your child. *Valerie’s son, Elijah, experienced seizures as a toddler and was diagnosed with autism in 1994 at the age of four. Valerie’s memoir, Elijah’s Cup, beautifully documents her parenting journey as she learns to embrace her son’s neurological disorder. Do non-autistic parents have special challenges because they cannot grasp their child’s unique perception of the world? Again…it’s a mix. A non-autistic parent may need more patience or understanding about why their child has certain behaviors. For instance, they might scold when they shouldn’t. But they can help their child with social skills and understanding social cues [from a neurotypical perspective]. |
Valerie with Her Son, Elijah
Photos: Courtesy of Autism Speaks |
In Disabilities Studies Quarterly, you wrote, “Though I still possess many elements of the social anxiety I experienced over the years…I have grown a lot. I owe this to knowing my diagnosis and to becoming an ever more self-aware person with autism.” Please describe what it means to be a more ‘self-aware person with autism.’
Valerie explains that it’s about understanding your challenges and then finding ways to overcome them.
For me, I understand much better how to be sure I’m taking care of things in my sensory profile – to not be as burdened by that. It’s about knowing that I have the power to do something about it. Others on the spectrum can do the same, no matter what the specific challenges are.
As an organization, Autism Speaks is moving from a culture of awareness to understanding and acceptance. Society at large is meeting us part way. There’s a new generation of autistic people walking through doors that weren’t there before.
What would you tell a young woman who has just recently been diagnosed to help her to understand that, although she’ll have to continue to work on her unique challenges, she can have a happy and successful life?
It’s okay to shine in your own unique way! Hang out with and make friends with people who celebrate that.
Where do you find sanctuary?
I find sanctuary in gardening…and in writing…definitely through my writing.
Valerie explains that it’s about understanding your challenges and then finding ways to overcome them.
For me, I understand much better how to be sure I’m taking care of things in my sensory profile – to not be as burdened by that. It’s about knowing that I have the power to do something about it. Others on the spectrum can do the same, no matter what the specific challenges are.
As an organization, Autism Speaks is moving from a culture of awareness to understanding and acceptance. Society at large is meeting us part way. There’s a new generation of autistic people walking through doors that weren’t there before.
What would you tell a young woman who has just recently been diagnosed to help her to understand that, although she’ll have to continue to work on her unique challenges, she can have a happy and successful life?
It’s okay to shine in your own unique way! Hang out with and make friends with people who celebrate that.
Where do you find sanctuary?
I find sanctuary in gardening…and in writing…definitely through my writing.
Click Book Cover for More Information or to Purchase
|
