The Three Models of Autism – One Person’s Perspective

Jackie McMillan, BES

Jackie McMillan, BES

Autism College occasionally publishes guest blogs of different perspectives.  This blogpost is by Jackie McMillan, B.E.S., who has Asperger’s Syndrome. Jackie’s self-directed recovery started in 1976 at age 11.  Since her first inkling that she was autistic in 1988, Jackie has been combining her recovery discoveries with those of other autistics, and with scientific research from a variety of health fields.  Finding no workable model of autism, she has created one that helps others to optimize the gifts, and minimize the challenges of Autistic Spectrum Disorders.  She has drawn on her degree in environmental studies, two years of pre-medical training, and many certifications in complementary health.  Jackie lives by the motto:  If you know things have to change, you might as well enjoy it! For more information about McMillan, visit  ThriveWithAutism.ca  

The Three Models of Autism

Have you ever wondered why some autistics get health and functional improvements from an intervention like food changes, and other autistics just don’t? Or wondered why there’s such a big gap between a good day, and a bad day, for the autistic in your life?

I have a unique perspective on this. I have autism, and at age 11, I spent one month at a wilderness canoe-tripping organization. Through that month, ever-so-gradually, my pain levels dropped, my emotions smoothed out, my thinking and memory improved, my reaction times got much faster, and I was able to make and keep friends. Unfortunately, within two days of my return to my normal inner-city environment, everything slid back to ground zero. I desperately wanted to go back to that amazing quality of life, though, and I was determined to figure out how to recreate it.

The Turning Point:

I turned my life into a science experiment, testing out every factor that had been different between these two environments. Through lifestyle choices, my thinking improved enough that I was able to go through the science track in high school, where I began to chase down my symptoms in the medical journals. No-one ever mentioned autism; my parents felt I had enough to deal with, sans diagnosis and the threats of institutionalization which would have been normal at that time.

In my second year of pre-medical studies, I hit a roadblock. Though the medical journals covered many of the factors which I had discovered could help or hurt me, the medical program was focusing all of its efforts on diagnostics, and drugs. I knew drugs were trouble; in a pharmacology course, I had looked up every drug I’d ever taken. I had all the side effects plus some, and even the intended effects were disproportional.

I took some time off to regroup, and ended up in a different university program, environmental studies. Around that time, a nurse gave me an informal diagnosis of autism. The medical journals were spot on in their diagnostic criteria of ASDs (as applied to me), but the treatments and theories didn’t make sense at all, in terms of my own experiences. Fortunately, other autistics’ experiences mirrored mine: I wasn’t crazy in what I had identified could help, or hurt!

Right now, there are three models of autism.

The Outdated Model of Autism:

The outdated model says that autism is an incurable neurological disorder, and that nothing can be done except to suppress the symptoms in a variety of ways. If an autistic’s health improves enough to camouflage in the school or working world, then the original diagnosis must have been wrong. An unintended result is that this model silences autistics who have experienced some degree of recovery.

The Bio-Medical Model of Autism:

We now know that this outdated model isn’t true, because doctor’s children have recovered enough health function that these MDs have begun treating other autistic children, with some success. These doctors are working with the biomedical model, which says that autism is caused by some combination of malnourishment, impaired detoxification, and immune dysfunction.

The bio-medical treatments are expensive supplements, detox protocols, and immune supports. Unfortunately, it is often carried out in a “one-size-fits-all” manner, without careful study of which impairments might need to be addressed before action can be taken on the others, for each individual. It is also inaccessible to many who cannot afford the treatments, or find a doctor who keeps up with the research, and the results are spotty.

The Five Root Causes Model of Autism:

But there are many, many adults in the autistic spectrum who began with much more impairments, yet are now sufficiently functional that we can participate (at least to some extent) in venues and interactions formerly limited to the non-autistic population. Our collective experiences point to two root causes of autism which are not included in the biomedical model. These are unresolved trauma, and brain and nervous system impingement.

Autistic experiences also point to simple and inexpensive lifestyle choices which can maximize function — or quickly detract from it. This makes a great deal of sense of the variable function and symptoms of each individual with an ASD, from day to day! With different blends of the different root causes in action for each autistic individual, these lifestyle choices vary, but the commonalities are obvious.

Interventions vs. Lifestyle? Or both?

Beyond lifestyle choices, interventions can still make a huge difference to health, function, and quality of life for autistics. How do we tell which interventions will help which autistic? Fortunately, the symptoms themselves point the way. The unique symptoms expressed by each individual can make it much easier to understand which of the five causes might be in action, to which degree, and in what order of precedence, for that specific individual.

But tailoring treatments to the relevant root causes is not enough, on its own. Without the lifestyle changes which support a return to health, functional gains are as short-lived as mine were from that summer camp experience. Fortunately, what is healthiest for people with ASDs is what is healthiest for our entire human race. Health challenges as disparate as hair loss and cancer respond favourably to the same lifestyle changes.

Which straw broke the camel’s back to bring on autistic symptoms can be figured out, and quality of life improved, for every individual on the autistic spectrum. Some repairs are easier than others, and some are more complete. But the potential contributions all of us autistics, with our problem-solving brains, are needed by our culture in this time of change. Won’t you please help us to thrive?

More Than Just Coping: Empowerment Strategies for Parents

Jeremy Sicile-Kira - then

Jeremy Sicile-Kira – then

Yesterday I presented at IEP Day (Involved Exceptional Parents’ Day Conference) in San Diego. I  promised to post some information here for participants, so they could easily access some links to free information. Feel free to pass this to other parents who need the information.

As a parent of a newly diagnosed child with special needs, it is not always easy. As we discussed yesterday, you may be feeling very emotional and upset, and that is normal. Remember, you are not alone. Many parents have been there before, and joining support groups with parents can be very helpful. You can share information.

Remember, you may be eligible for services and sometimes things go smoothly, sometimes they do not, and every school district is different. You will have to learn to be an advocate for your child. Knowing your rights is important. You will get services based on facts, not emotions.

In each state, there is information available for free to help you know your rights and responsibilities as a parent of a child with a disability, or a person with a disability. In some states it is called Protection and Advocacy; in California it is Disability Rights California   http://www.disabilityrightsca.org.

There is a lot of information on that website, and great publications you can read on different rights and responsibilities you have. For example, If you want information as a parent of a child who receives special education services, click on “Publications and Resources” at the top http://www.disabilityrightsca.org/pubs/PublicationsIndex.htm.   You can see the list of publications that explain in simple language what the laws mean. If English is not your native language, you can click on the language you want to read the document in (Spanish, Korean, etc). You want to read “The Special Education Rights and Responsibilities (SERR) in regards to special education.

Here is a series of blogposts I wrote specifically for parents of newly diagnosed children. This information is from my newly revised book, Autism Spectrum Disorder (2014). Although the book is specifically geared towards autism, the advice in the blogposts below is true for any new parent of a special needs child, especially # 1 and # 4.

1.  Advice for Parents of Newly Diagnosed Children with Autism http://www.psychologytoday.com/blog/the-autism-advocate/201402/advice-parents-newly-diagnosed-children-autism

2.  New to Autism? Where to Go for Information http://www.psychologytoday.com/blog/the-autism-advocate/201402/new-autism-where-go-information

3.  Newly Diagnosed Child With Autism? First Steps for Parents http://www.psychologytoday.com/blog/the-autism-advocate/201402/newly-diagnosed-child-autism-first-steps-parents

4.   Parents New to Autism: More First Steps to Take http://www.psychologytoday.com/blog/the-autism-advocate/201402/parents-new-autism-more-first-steps-take

You may also wish to sign up to receive free occasional newsletters from my website  AutismCollege.com – scroll down the home page.

If you want to see my son Jeremy’s commencement speech to hear his words, you will find it here: Autism: Transition to Adulthood: Jeremy Sicile-Kira’s High School Commencement Speech.

Even if your child cannot speak, it does not mean he or she does not understand. Speak in whatever language you are comfortable in. Research shows that hearing two languages does not impede understanding. Just be consistent in using the same language.

Remember: your child is different – but not less! Tell your child everyday that you love him or her. Read to your child, sing to your child. You are connecting with your child, and that is the most important ‘therapy’ in the world. Over time you will see that you are learning as much from him or her as your child is learning from you. never give up on your child!

Jeremy Sicile-Kira - now

Jeremy Sicile-Kira – now

Preparing to Move : Will mom survive the empty autism nest?

Rebecca and Jeremy Sicile-Kira,  high school graduation, June 2010

Rebecca and Jeremy Sicile-Kira,
high school graduation, June 2010

When my daughter Rebecca moved away to college four years ago, it was difficult. At the time I joked that she left me living with two non-verbals (my husband and Jeremy) but that is what it felt like. Rebecca was vivacious, energetic, very verbal and social, with friends in and out of the house. I loved hearing the laughter (the sweetest sound in the world) emanating from her bedroom or the family room downstairs.

The other difficulty was the concern I had, like most parents, of how your teenager will do being away from home. Will she make wise choices? Have we taught her enough about staying safe without making her paranoid? Have we taught her enough about staying organized, doing household chores and cooking so that she will be a good roommate once she moves out of the dormitory? (To be honest, she never showed any enthusiasm for any household activities, except perhaps baking chocolate chip cookies from scratch).

Now it is Jeremy’s turn to move out, and I am torn by many emotions. Before, Jeremy’s move was a theoretical construct. Now it is official; word came from the powers that be in recent days. We have been preparing for this moment for a long time; in fact we have been advocating for many years for this to happen. I’ve been bracing myself for this moment for some time, and it is finally here. Jeremy and I have written abut this in A Full Life with Autism, and I’ve discussed it some in Autism Spectrum Disorder (revised).

On the one hand, I am not getting any younger and I am really exhausted from the level of care and supervision Jeremy needs, as well as supporting him in reaching his goals as a writer, advocate and artist. It would be OK if all I did was support Jeremy, but I must earn a living as well, and exercise to stay healthy and strong. We are lucky in that we have some help from the system that pays for some hours of respite and support to Jeremy. But that requires my time and energy – finding, training, supervising staff and teaching Jeremy to have a larger role in that. Thus why I have little downtime or social life.

But the wonderful support staff who are in and out of here with Jeremy for part of the day have somewhat filled  part of the void left by Rebecca in terms of young energy and vivaciousness (obviously they could never replace her as my daughter!). I realize when Jeremy moves out, not only will I miss him, but I will miss the support staff and Handsome the dog. As a writer, I have at times missed the lack of privacy with people and Jeremy coming and going in the house, but I realize that the Afternoon Angels and Jeremy’s Team have been an important part of my social life for some time now. And when Jeremy goes, so will they.

As we start telling friends and family Jeremy is really moving within the next six months, the most common reaction is “you won’t know what to do with yourself.” Actually, I have a pretty good idea – focus on my health and exercise, work on a pilot program that is currently in concept stage, accept more speaking gigs, earn more money to help pay for Jeremy’s housing costs (and Rebecca’s college loans),  write that book I have always wanted to write (it doesn’t have autism in the title!), and sleep a bit more. Most of all, I will be able to live spontaneously: not have to check the schedule to make sure I have ‘Jeremy coverage’ before saying yes to some much needed ‘me’ time – taking a walk, having a cup of coffee or glass of wine with a friend, going to the movies with my husband.

I know it will not be easy emotionally speaking – I will miss Jeremy, just as I missed Rebecca when she moved away (and still miss her). But I know we are very connected, and nothing will ever change that.

Jeremy and Rebecca Sicile-Kira,  college students

Jeremy and Rebecca Sicile-Kira,
college students

 

What Does your Kid Want to Be When He or She Grows Up? Options Available at FRED Conference

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Every child has dreams and every parent wants to help them come true – and parents of children who are different (but not less) are no different. Only thing is, we need to be looking at options and working together to create some where none exist.

That’s why the national FRED conference is so important. Meeting other like-minded people to create a future worth dreaming about is empowering. And it is never too early to start. Last year, Jeremy contributed on a panel and this year it’s my turn.  There will be panels on housing models, employment, safety and well-being, and self-care (for the parents – we need to take care of ourselves, too!)

FRED 2014 is taking place Friday March 28 and Saturday March 29, at the LAX Marriott in Los Angeles. For more information about the experts (including many self-advocates) donating their time wisdom, experience and hope, visit www.FREDconference.org. I’m counting on seeing you there!

Meanwhile, enjoy this announcement from FRED about this year’s FRED Pioneer Award Winner, Kevin McGuire.

AbleRoad Founder and Disability Rights Leader Named as FRED Pioneer Award Winner

Manhattan Beach, Calif. — February 27, 2014 — Today the FRED Conference announced that Kevin McGuire is the 2014 recipient of the FRED Pioneer Award. This award is given to the individual or organization that best embodies innovation and advancement in the field of disability rights.

The FRED nomination committee selected Kevin McGuire in recognition of his pioneering work launching AbleRoad, the most comprehensive website and app designed to connect people with accessible places, and for his lifelong impact in the disabilities field. Kevin McGuire will receive the award in Los Angeles on March 28th when he serves as the FRED Conference keynote speaker.

“We are very proud to have Kevin McGuire as this year’s winner. He is a role model for so many in the disability community, both personally and professionally”, said FRED Director Mari-Anne Kehler. “Kevin has led by example to show that disabilities are not limitations, and that with vision and hard work anyone can succeed, and exceed, in life. He is a real visionary and true pioneer.”

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AbleRoad is a website and a smartphone app that allows users to review any public space – from restaurants and theaters to parks, hospitals and concert venues – and rate it for how well it accommodates people with disabilities or those with medical conditions. Users can upload photos and leave detailed reviews for others to read, allowing people with disabilities, their friends and caregivers to research whether a certain business or place is accessible, and to choose the places they want to patronize. AbleRoad also helps businesses understand the challenges their location may pose to those who use a wheelchair or have other mobility, vision, hearing or cognitive disabilities, and persuade them to make changes to improve their accessibility.

McGuire is also CEO and Founder of McGuire Associates, Inc., the nation’s leading consulting firm specializing in compliance with disability laws. His clients include high profile venues such as the Staples Center and Gillette Stadium. He has produced an ADA customer service training video for frontline employees, and a training video on how to evacuate people with disabilities from buildings during emergencies, which have been sold worldwide. He has used a wheelchair since age 7, when an intoxicated driver struck him. He has recently written a novel, PATRICK, based on his experiences growing up as a wheelchair user.

This is the second annual FRED Pioneer Award. Last year’s recipient was Pegi Young, who along with her husband, rocker Neil Young, founded The Bridge School for students with disabilities.

About FRED Conference: FRED is the premier organization to galvanize leaders focused to advance and enhance the futures of adults with disabilities. FRED is dedicated to the idea that all individuals deserve to live their passions, and determine their choice of the future they live. FRED brings top thinkers: experts, families, and self-advocates, together to share leading practices and accelerate approaches to building those futures. www.FREDconference.org