Voices From the Spectrum #23: Liane Holliday-Willey on Late Diagnosis, Conspiracy Theories, and Accepting Differences
Liane Holliday-Willey, EdD is an internationally-renowned author and speaker on autism spectrum conditions, communications, and learning diversity. She often speaks about both her positive and negative experiences living with Asperger’s syndrome while working in a variety of different positions as a university professor, writer, manure scooper, French fry maker, community volunteer, wife, and mother. Her advocacy goal is to help others understand the importance of accepting differences and individuality.
This week Liane shared with us her thoughts on late diagnosis, advocacy approaches, and protecting individuals on the spectrum from harm.
What led to you receiving a diagnosis at 35?
My child’s autism evaluation team suggested I seek a diagnosis following my child’s neuron/behavioral eval. I was lucky enough to have a chance encounter with Professor Tony Atwood shortly thereafter. Working with him, my individual psychiatrist, and, through the years, two psychologists and one neurologist, I continue to receive a dx of ASD, all thanks to the revelation that my child was affected.
Do you think having a diagnosis when you were younger would have helped you in school? What are the benefits and/or drawbacks to receiving a late diagnosis?
Yes. Definitely. I consider my child to be more fluent in neurotypical language and skills. She still has her own struggles and issues with ASD, but she is more of a chameleon and better able to access skills she was exposed to at a far earlier age than I was. If my supporters had realized I had Asperger syndrome, they could have helped me with my sensory issues that happen when I’m in crowds, unable to control noise and movement and smell, and when I’m in a challenging motor movement situation. My physical education program might have been adapted better; leaving me with less falls and bumps, bruises, and head injuries, too! I could have received more specific OT assistance, had my supporters known I was in need of supervised OT help. And I believe my difficulties understanding the nuances of language, specifically literal language, would have been addressed directly rather than by me finding out in many “OHH!! Now I get it” moments. And… I think had folks known I was an Aspie, they could have helped me to recognize and avoid predators.
The benefit to receiving a dx at any age is simple- now that I know I truly do have a neuro/biological difference, I can wrap my world around supports, skills, self-knowledge and self-advocacy that helps me be the best I can be for everyone, and myself!
Did your family support/embrace/accept your neurodiversity when you were younger? Do they now?
When I was a child, yes. Absolutely. As I grew older, and especially now that I’m a parent, I think it’s more challenging. Perhaps my family finds my ability to look and act and sometimes actually be nearly NT, leads them to forget I still have residual challenges. They are surely surprised when they notice I have some regression in my ability to be flexible and resilient. Research is finding that indeed, autism does become more apparent as we age. I’m nearing 60 and boy, do I find this to be true! Executive functioning is really a struggle these days.
What do you wish the adults in your life (parents, friends, teachers, coaches, etc.) would have done differently when you were growing up?
If they could have read my personality as AS rather than naive or simply one who didn’t try hard enough, I think I might have gotten more protection from predators. But for the most part, my teachers, etc., were wonderful advocates during a time when AS wasn’t heard of.
In the professional development you’ve conducted with educators, what have you discovered to be the most common misconceptions or knowledge gaps they appear to have regarding students on the spectrum?
They seem to forget many of us are able to put on a good act for long periods of time, when in reality our tummies are churning, our mind is racing, and our anxiety is climbing to dangerous levels. It sometimes takes a detective to see just how differently we perceive things, because over the years and loads of trial and error, many of us learn how to cope without exposing our challenges until we are alone, extremely low, or very distressed. By then, much damage has been done to our self-esteem, our progress in whatever it is we are working toward, and our ability to learn and grow. And if we are female… well, let’s just say there is still a wide gap between what we know about males vs. what we know about females. The same gap applies in terms of what we know about ASD in the young and in the old.
You’ve blogged about the dangers social media outlets pose for people on the spectrum. What advice do you have for parents of teens on the spectrum who are using social media?
Don’t believe much of anything you read. Check your sources on sites like factcheck.org. Learn about propaganda and the ability for online predators to find and recruit folks who use social media as their main source of friendship and socializing. Directly discuss the dangers of stalking, giving out information, falling for wrong information, and the possibility that there are those who use social media to teach dangerous paranoia and conspiracy theories.
Do you have any advice for parents on talking to their children on the spectrum about autism?
Gosh. This is a very difficult subject for me. Every child has their own frame of reference, every parent their own comfort zone. My advice is to talk to teachers, counselors, other friends or relatives, and anyone else who serves as the child’s supporter, so that a comprehensive and individualized plan is constructed.
What mistakes do autism advocates make?
My biggest complaint is when advocates dismiss my challenges as not challenging enough, because, apparently, I, like others, can make autism look too easy to navigate. Again, knowing we often learn how to talk the talk, doesn’t mean we can think along the same lines as current social standards would have us. At the same time, I don’t like it when advocates think we are affected in ways that automatically mean we couldn’t possibly fend for ourselves, get a decent job to our liking, understand social dialogue, engage in relationships, etc. There needs to be a fine balance between understanding we have challenges, while realizing we have unlimited potential in many areas of our lives. If advocates engage in honest and open and regular dialogue with us, they will get to know how autism affects us as individuals and, from there, we can all learn how to relate to one another.
Anything else you would like to say to the readers of this blog?
I find that using the scientific method to educate myself on how to solve problems, combined with studying communication and linguistics, along with being honest about my strengths and weakness, is the special key that makes my self-advocacy and my life easier to enjoy and navigate. I encourage everyone to find the things that make up their special key. We are all different, but we are all spectacular in our own ways! And please, let’s not forget the elderly and people of color who are in our community! We need to find them, help them, and encourage them to join us in living the life they choose to live.