Building Bridges Between Two Worlds: An Evening with World Renowned Asperger Advocate Liane Holliday Willey PART 1

Last week, I attended a "Parents Evening" hosted by our local school division, with keynote speaker and world-renownded autistm self-advocate, Liane Holliday Willey. Liane has Aspergers, as does her father and her daughter. She clearly has a unique perspective on the subject, so I expected it to be informative. Useful. Interesting.

I didn't expect it to be transformative.

It was such an important experience for me, that I feel compelled to share it with you in detail. There were so many crucial pieces of insight in Liane's presentation, that I am splitting this into a two-part post. Today I will share the ways in which Liane's family laid the foundation for her success in adulthood, and tomorrow I'll delve into why the experience of hearing Liane speak was so transformative for me.

Liane began with her description of how to provide a Home Based Intervention:

A home-based intervention is basically a laid-back, but intentional, plan of action to empower your aspie. It's how Liane says she was raised (long before her diagnosis) and it includes these points:

• Promote independence
• Strive to communicate with your child, especially by being bilingual: learn to speak both ________ (insert your language here) and Aspergers 

Liane credits her family for her own success. She described in a series of slides how her family set her up for this success:
 
Her Father was Her Teacher:

• He would people-watch with her as a young girl, and help her understand and analyze NT behaviours
• He 'gave her a narrated life' - used every opportunity to explain to her how the rest of the world worked
• Employed lots of visual aids an taught with pictures (stick figure instructions for chores etc)
• Established routines!!! and predictability
• Taught problem solving techniques directly (ie, here's the problem, let's explore what would happen if you a, b, c, d, etc).
• Used logic, not emotion, to explain things
• Taught that eccentricities were to be valued, what many people saw as weaknesses, he held up as strengths.
• Interceded always when she was being taken advantage of. Always stood up for her.
• Came to her aid whenever she called, no exceptions, no questions asked
• Was extremely dependable and predictable 

Her Mother Was Her Coach/PR Agent

• dating advice
• translator of English to AS
• shopping for clothes/fashion advice
• helped put a solid foot in NT land
• got to know her school's personell
• presented Liane to others as competent and capable
• explained her behaviours as literal when they offended authority figures
• put her in the hands of people who could and would help:
• one aunt for manners
• another aunt for unconditional understanding (never being judged as weird, embraced for quirks)
• a teenaged mentor to model and facilitate peer relationship management 
• all of these special relationships continued into adulthood 

Her Family Created an Aspie Friendly Home:

• Was always inviting and welcoming to friends
• Had a pool and plenty of popular recreational activities to engage peers 

Her Family Provided Special Therapies

• Pets - Liane's special interest (aspie passion) is for horses, and she strongly endorses horse therapy for kids on the spectrum
• Water - frequent swimming/bathing
• A wide open basement for 24 hours of sensory integration
• Music
• Strenous physical activity -Her aspie daughter has so far avoided meds into her 20s, in part she thinks from her involvement in competitive swimming (strenuous excercize throughout the week) because it keeps her seratonin levels naturally high. Liane's activity was, and still is, biking. She recommends finding a sport or physical activity your child enjoys, and focussing solely on that one, doing it multiple times per week.

All of those qualities and efforts from her family, Liane says, led to her ability to overcome and persevere. This was an important point, because she emphasized that these efforts did not make life easy for her, they did not eliminate her struggle with being autistic in an NT world. They just made it possible for her not to cave under the weight of those struggles. She wanted parents to know that no matter what we do, our aspies are going to have a challenging life. They are going to fall down, get trampled on, be rejected and very likely depressed and anxious. No matter what we do, we are going to struggle our whole lives to help them - but the key is finding ways to help them that are meaninful and effective for them. That is why Liane travels, speaks, and writes on the subject - because as part of an aspie family, she feels she has valuable insights into which methods are effective.

As awful as this sounds, the most reassuring part of Liane's presentation for me, was when she rattled off the laundry list of diagnoses she has: significant OCD, ADHD, anxiety disorder, Aspergers, and dyscalculia.

Why was that so reassuring to me? Well, Simon is looking like he'll qualify for most of those labels in the not-too-distant future, and as positive as I try to stay, the way they keep piling up on him terrifies me. It eats away at me and causes me endless and enormous worry. And yet, here was this beautiful, confident, hilarious, talented author, teacher, public speaker and mother, Liane, who was telling me she was living a remarkably full and rewarding life with exactly the same challenges that Simon has. There is no crystal ball that will entirely alleviate my worry, but Liane's experience gave me the next best thing: hope.

Yet another eye opener - Liane was clear that without medication, she would not be able to function at this level. She would not be a speaker, not able to travel, not able to write and tour. Her intense anxiety and agoraphobia, along with OCD, would prevent her from living this full life, if she weren't able to relieve them with multiple medications (anti-anxiety meds, anti-depressants, etc). That revelation gave me pause, given my fairly staunch resistance to meds at this point. I'm not running out to the pharmacy, but I can definitely say it opened my mind on the subject more than anything else ever has, especially as an option when Simon is older.

Other Important Points from Liane's Presentation:


1. Check out The Brain That Changes Itself, a book about how the brain will forge new ways of thinking, if given the right 'excercize'. You can also watch a documentary about the book and the concept, here. Liane feels it's pivotal to an Aspie's success, that parents offer them the right kind of 'excersize' so we put some flex into that classic ASD rigidity.

2. ASD is marked by the presence of splinter skills - mountains and valleys in terms of abilities and interests, your child is brilliant in 1 thing - your job is to find it, embrace it, and run full-force with it.

3. Don't miss the signs of issues in your other kids - don't allow yourself to be completely swallowed up by managing Aspergers in one child, because all kids have needs growing up and you need to be emotionally present for all of them.

4. Keep things lighthearted - always fall back on the lighter side of life because it is STILL THERE even in a home with Aspergers. She mentioned this sign, which I've had in my home for some time and look to often as a way to bring back my perspective.

5. Break big problems down into small pieces.

6. Aspies will hear their whole childhood "you need to learn this about the NT world, you need to learn that about the NT world, you need to learn eye contact, you need to learn socialization, you need to learn empathy, etc etc etc - make sure your child's entire life is not about them learning to understand others. Others need to be willing to learn about Aspergers and understand them.

7. Liane says she loves, LOVES the way she thinks so differently than others. But she says we must acknowledge that autism is an extremely demanding, complex, and often overwhelming way to have your brain work. Sometimes, we just need to cut them some slack in recognition of this.

Finally, at the end of the evening during the Q & A portion, a member of the audience asked "If you had to choose just one treatment that made the biggest difference, what would it be?". I think they assumed the answer would be something like Xanax or CBT, but it wasn't.
 

Liane thought for only a moment and said, "The best treatment I ever got, was my parents using logic to explain the world to me. Here's your world, here's the NT world, and here's how to bridge the space between".

You can find Liane's website here, along with links to purchase her books. If you ever have the opportunity to hear Liane speak, don't miss it. You just might find your brain changing itself.