Voices From the Spectrum #21: Rickkie Johnson on a “Person-Centered” Approach to Autism

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Rickkie Johnson is an autistic parent of 3 daughters, two of whom are autistic, and lives in Melbourne, Australia. Rickkie is an advocate for neurodiversity and writes about the full acceptance and protection of autistics. Rickkie manages the website proudautisticliving.com and contributes to the Penfriend Project autistic writing team on geekclubbooks.com. This week Rickkie shared with me an evolving perspective on autism, and how to raise autistic children using a “person-centered approach.”

At what age were you diagnosed? How did you feel about the label of autism at the time?

I was formally diagnosed during 2013 at the age of 43. This formal diagnosis was really the culmination of all the wondering I had done about this for a few years prior. I am not 100% sure when I began that reflection. I believe it was around the 2010 mark. I recently found a note I had made on Evernote dated in 2010 that read along the lines of “maybe I really am autistic…”

I had pretty much self diagnosed by the beginning of 2013, even though the formal process was still some time off. I completed a number of online assessments and quizzes, in fact, as many as I could find, and I talked to some autistic adults that I knew as well. By the time the assessment occurred, I knew myself, but it was important to me personally to have that validated by the professional.

Prior to diagnosis, for quite some time, I had what I think was a positive view of autism. Two of my children were already diagnosed, and, thanks to my partner who had worked with many autistic children in her professional role as a teacher and student welfare coordinator, I understood them to be different not disordered.

But, at the time of my diagnosis, I had a bit of a personal crisis with that. I guess that attitude to the label is different somehow when applied to the self. I spent a few months depressed about this and feeling a little lost. I felt a sense of responsibility because I made my children Autistic.

Thankfully this was a short-lived feeling, and I emerged to a place of acceptance and celebration of being autistic.

 

Has your perspective on autism changed over the years? If so, in what ways?

Absolutely! My introduction to autism was, like so many of my age group, the movie Rain Man. Prior to that, I am not even sure I knew the word.

Apart from this, over the next 12 years or so, I knew of the word’s existence, but very little about it. Then my daughter was diagnosed and so began a learning curve that was steep.

As I said, I am so thankful that my partner Andrea had dealings and insight into autism. I was able to understand very quickly that Autism was a neurological issue, and that autistic people are just wired differently.

Though in the earlier days I would have described that difference as a deficit or impairment, I have come to the realization that this is in fact incorrect.

Autism is a difference and not a disorder. That difference is every bit as acceptable, complete and perfect as a so-called neurotypical brain is.

I think perhaps what has changed my attitude and developed my acceptance and celebration the most is the realization that, in large part, the difficulties and struggles that we as autistics can have are largely the result of co-morbid conditions. Not entirely, but largely. Often what are described as autism are in fact co-occurring conditions.

In the end my thinking has moved from autism as a deficit to autism as just a different way of being.

 

What challenges did you experience growing up as a result of other people misunderstanding autism?

Growing up for anyone has its challenges. The unique setting of every individual circumstance mixed with the individual person doing the growing up creates the perfect storm for challenges; that’s what growing up is all about I guess. However, as an autistic person, a whole other load of issues and challenges are thrown in.

For me personally, I struggled incredibly. I grew up as an undiagnosed autistic, which of course presented challenges in itself, many of which centred around trying to fit in and be like everyone else.

Moving houses was also a common occurrence. I attended 7 schools and lived in many more homes than that by the time I reached the end of high school. So along with the fitting in and trying to be normal was a perpetual state of either being the new kid, or being in a state of not the new kid, but not around long enough to have shared history of the place.

Bullying was ever-present, at home or at school. It just was. It was like there was no safe place to find. The only real safe place I had was my Grandma’s house, and I didn’t get to be there as much as I wanted to.

Throughout childhood and on through life I have experienced an inner voice that has always been there whispering with advice, logic, counter-argument and interpretation of situations. I believe this voice was what, in a sense, managed to keep me sane, and it was certainly this inner voice that told me I was different somehow from everyone else. Not a little bit different, but, in fact, fundamentally different.

The voice kept me sane, but of course in the face of constant bullying and not fitting in and the like it wasn’t able to counter the sense that I was broken or wrong. Not just different, but broken and wrong. I believe that this really manifested in a zealous attempt to fit in, to work it out, to fake it till I made it. Of course, I never ever made it. I always fell short!

 

In a recent article you wrote about a person-centered approach to autism, you mentioned that “in the realm of disabilities…neurodiversity myths” abound. Can you explain the types of myths you’ve encountered?

There are so many myths that are prevalent in the autism and neurodiversity world:

Autistics don’t have empathy.

Autistics can’t feel.

Most autistics don’t speak.

Autistic people can’t work.

You don’t look autistic.

Autistics are Savants.

Autistics are intellectually disabled.

Autistics can’t communicate.

Autism is a childhood thing.

Autism needs fixing.

Autism is bad.

Co-morbids are part of the autism.

The spectrum has two ends going from mild to severe.

The list could go on and on, the myths abound, they get weirder and weirder, and all they do is make it difficult for autistic people to get the accommodations and services that we need to live the most productive and successful lives.

 

How does a parent go about fulfilling a “person-centered approach” to supporting their child?

The most important thing a parent can do to ensure a person-centred approach for their child is to insist on their child as an individual. To reject the use of functioning labels like Low or High, mild, severe etc.

When those labels are used, autism professionals like to apply a pre-configured set of strategies for the child. They fail to fully investigate and get an understanding of what the strengths, skills, challenges and needs are for that child.

The point in the end is that every child is different, every child has strengths and challenges, and any plan to assist them needs to be as individually tailored and centred on that person to achieve the best outcomes.

 

What are some of the more harmful therapies or treatments you’ve seen used to “treat” autism?

Unfortunately there are many. Most of the time these are based on the idea that the autism needs to be recovered from or cured. That there is a non-autistic person hiding inside or behind the autistic one. Of course this is just false and leads to circumstances where autistic human persons have harmful treatments inflicted on them.

There are the most obviously dangerous things like MMS, which is bleach, inflicted both orally and anally. It is also known as CD. Others in this category include GcMaf, Hyperbaric Oxygen Chambers, Chelation and Fecal Transplants.

Then there are the less obvious ones that masquerade as helpful. There are therapies like ABA which is at its root an attempt to make the autistic child indistinguishable from the non-autistic child. It may seem to parents like a great ideal, however, the results are questionable at best and there is much anecdotal evidence where autistics subjected to it develop PTSD.

Chiropractic treatments and programs such as the Sonrise program fall into this same category, where at heart is a desire to fundamentally change their child from autistic to non-autistic.

 

What mistakes do autism advocates make?

Just like everyone, advocates make mistakes. Everyone makes mistakes, and the most important thing is to learn from them, acknowledge them and sincerely apologise and aim to move forward in a positive way.

I think perhaps the biggest mistake that advocates can make is a throwing the baby out with the bathwater. A pre-judging of all parents in a particular way, or all therapies as bad therapies.

At times we can allow our passion to run to the extreme and cause hurt and pain to others.

We can forget that many parents of autistics do want the best for their kids and don’t want to fundamentally change them, and so we write them off as curebies or the like. We neglect to at times even try to work together. There are real allies out there and advocates need to team up with them and work together for autism acceptance.

 

What’s the most important thing parents can do for their autistic children?

Accept your child for who they are.

Don’t try to recover, heal or cure your child from the autism.

Listen to actually autistic people.

Don’t think because they can’t do something now they never will be able to.

Presume competence.

Provide whatever communication assistance they need; don’t make it all about talking with the mouth parts.

 

Connect and read more about Rickkie’s perspectives on autism:

facebook.com/proudautistic

twitter.com/rickkiejoh

www.proudautisticliving.com

 

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