Wednesday, February 12, 2014

The "other" kind of expert

(This post is an introduction to a series that I will be doing on Autism and Dehumanization. Some of these posts may contain triggers for certain people as some of the topics will touch very sensitive material. These will be clearly outlined at the beginning of each post.)

Over the years, I have been fortunate to have many great learning opportunities.

I've studied singing with internationally acclaimed opera superstars.

I've studied political science and sociology from some of the finest academic minds in our country.

I've studied business management and best practices from some of the most innovative entrepreneurs in their industry.

You see, when one wants to learn about something, they go to the source.

As interesting as someone's first person account of a lecture on an archaeological trek might be, I'm the kind of person would rather talk to the actual archeologist who led the expedition. Assuming, of course, that there was no way for me to tag along and see the whole thing first hand.

Yesterday, I was ranty and ravey about parents not being the experts on their children. I've had the chance to have some really good dialogue on this post, and while I stand by my original statement, one reader made an excellent point: Experts don't always know EVERYTHING. But they know more than anyone else in the room. 

That is a fair statement. In some ways, parents know more than anyone else in the room about their kiddos, particularly when those kiddos are very young and are unable to really understand themselves or their own motivations. However, I would contend that- as soon as humanly possible- parents should be prepared to hand over the proverbial reigns and acknowledge that only their child can truly be the expert on themselves. Our goal, as parents, isn't to be the one who knows everything. It is to give our children (who are the real experts) the opportunity to advocate for themselves.  This is as true for typically developing children as it is for those with exceptionalities: in order to achieve sense of personal independence, all children must one day learn the skills to "speak" for themselves.

At this point in time, Sammie doesn't 'speak'. He communicates, but he doesn't speak. I am not sure he ever will, as he appears clearly more interested in alternative methods of communication than he is in using words...time will tell, and I will respect whatever voice he chooses to use.

So yes, given the definition above, I can accept that- at least at some point in our children's lives- we are as close to experts on them as we can get.

But, expertise itself is an interesting thing.

I remember one of my professors scoffed at being referred to as a sociology expert. He claimed that the field of sociology was so vast that no one could ever claim an expertise on it. Rather, most professors specialize in one of the hundreds of different areas within the discipline, and- from there- will even further refine their knowledge into a few very specific topics.

So, using his example, one would not be an "expert" on women studies.

One would be a student of women studies, who specialized in political theories of feminism, and has an expertise in Marxist/Materialist Feminism.

I always really liked that example as it implied that we are all lifelong students, even once we have achieved a level of expertise in our chosen field.

Bringing this back to our conversations on our Autistic children, it strikes me that this example applies just as easily to the entire Autism Community.  Within it, there are various levels of experts and specialists, each able to contribute very precise and valuable information to the picture, but not one being able to claim any sort of expertise on the condition as a whole.

We see this play out in the medical/therapeutic community by the different branches of specialists that interact with our children: Occupational Therapists, Speech Therapists, Physical Therapists, Behavioural Therapists, Pediatricians, Neurologists, Psychologists...the list is seemingly endless. Each of these individuals bring a unique and valuable insight into their specialized field of learning.

They are "experts". And we treat them as such.

But, by the definition offered above, expertise isn't necessarily something you learn in school. Otherwise, no parent could claim expertise on any area of child's life. There must be an element of lived experience that comes into play.

Surely, most of us could claim at least a certain level of expertise at our career. Or at our favourite hobby. Or in our favourite topic.

In our every day lives, we specialize all the time on the things that are important to us or that impact our lives in more tangible ways.

For my part, I've become a bit of an encyclopedia of Autism-related research. I have a gift for retaining information, particularly complex, scientific data, and am able to recall even the most subtle details of almost anything I read.

When we were getting Sammie diagnosed, I got into a passionate conversation with one of his diagnosticians about current trends in Autism research and was even able to send her several links on new articles that supported my positions. Her answer was "I've learned more about my own profession from you in one hour than I have in the past year."

(In case you're wondering, yeah- I was pretty proud of that one...)

So while I may be an "autism rookie" when it comes to parenting, I'm comfortable acknowledging that I am gaining considerable expertise in the area of "trends in Autism research", at least as far as a non-professional goes.

This lived experience model is the only employed by parents and professionals when it comes to parents being the experts on their children. Since parents spend the most time with their children, and see the biggest variety of behaviours and reactions, they are in the best position to advocate for their needs (again, until the child is able to advocate for themselves).

So professionals can be "experts."
And researchers can be "experts."
And parents can be "experts."

And we have no issues accepting any of those statements as being true.

But there appears to be a tremendous amount of resistance to the fourth kind of 'Autism expert'.  They are the ones we hardly see creeping up in research or being pointed to by professionals as sources. They are the ones that are mocked for attempting to forward their own unique lived experience. They are the people living with Autism, in the most literal sense of the phrase.

They are the Autistics.

Being those how are actually born with neurologies that are unquestionably similar to those my son has, it strikes me as incredibly odd that their point of view is so often rejected in conversations surrounding Autism.  From an academic standpoint, their information should be seen as invaluable qualitative knowledge that can shed light on countless phenomenons that we are only begin to uncover with conventional research methodology.

From the parenting perspective, I fail to understand how anyone would not benefit from a little 'insider' knowledge on what their child might be living.  After all, many of them are living similar things. This should make them excellent sources of information and opinion.

And yet, the resounding answer that seems to come from the medical and research community is 'we don't need your information' or 'you have nothing of value to contribute'.  Far too many Autistic minds are involved on the ground floor of research and awareness spreading campaigns. In fact, many of these campaigns seem to hinge on pretending that this community doesn't exist.

There is hardly a self-advocacy related thread that doesn't culminate in a mass response of "but you aren't like MY KID."  Parents, clinging desperately to archaic categorization labels like "high" and "low" functioning, claim that because Autism presents differently for some of the self-advocates (ie: they are verbal, and/or able to communicate, they appear to have higher cognitive abilities, etc.), that their lived experience is completely irrelevant when it comes to talking about the entire Autistic experience. Parents renounce the self-advocate pleas for identity-first language, claiming that only they can decide their child's identity, and ignore their appeals for inclusive language, including abandoning the focus on 'curing' Autism and instead re-enforcing the need for additional supports and long-term planning.

The pervasive mentality seems to be that because they are different from our children, that their information is completely irrelevant, a position that is completely untenable when you accept that every single person on the planet is different and unique. The entirety of human knowledge is based on the cumulative accounts of every individual experience, taken as a whole. Just because we have not directly experienced something doesn't mean that we are unable to accept or comment on its presence. I never took physics, but I can still tell you the formula for the theory of relativity...

Why are we ignoring this incredible source of untapped knowledge.  I have learned more about my son's sensory challenges in one conversation with another SPD Autistic adult than I have from reading dozens of books.  They explained to me that it was possible that what I was interpreting as a need for deep pressure was actually a need for vestibular imput. They were bang on. A little bit of balance integration added into his sensory diet has been tremendously helpful in helping him regulate himself this week.

It hardly seems responsible to our Autistic children to discount lived experience expertise that could help them based only on the fact that Autism is a spectrum disorder that presents different for every individual.  Surely we are able to glean insights on the things that are relevant and discount the things that wouldn't be relevant for every individual case?

For my part, I feel like I have no choice but to open my ears and listen.  Just as I am seeking out as much information from the medical community as I can to offer my son all the supports that he needs to enhance his quality of life, so must I be prepared to seek out information from other sources. Sometimes, those sources are other parents who have lived the same experiences I am living. Sometimes, those sources are other parents whose children don't have ASD, but who are still able to offer me valuable insight on child development in general.

And yes, sometimes, those sources are the adults with Autism who open my mind and my eyes to know clues about my son's life every day.  In fact, as days go by, it is becoming increasingly evident to me that they very might be the most important source of information available, to me and to the entire Autism community.

So why isn't anyone listening?

That very well may be the most important question facing the Autism community today.


1 comment:

  1. Yes, yes, a THOUSAND times YES. I wonder the same thing myself. My son is almost 7 years old, in 1st grade (mainstreamed) and doing pretty well. But he's "different", he's quirky. I know he thinks differently, and as soon as I found out that there was an autistic community (thanks Diary of a Mom), I drank the information in. I was SO surprised by the "not like my child" line, the attitude that an autistic adult's situation must EXACTLY match the autistic child's in order to have value. I actually blogged about it because it made me so annoyed ( It makes no rational sense. The example of Temple Grandin, who DIDN'T SPEAK till she was 4 years old, comes to mind - who could have predicted where she would be today by looking at her at the age of 4?

    I belong to linkedin and am in several autism groups, and I'm astounded at how many non-autistic professionals don't really "get", about how little contact they've had with autistic adults. Most of them are THRILLED when an adult "comes out" as autistic and shares their experience. I know I'm forever greatful to them for sharing their experiences so I can help my son navigate the neurotypical world, and so he can navigate it himself with confidence when he is old enough to fully advocate without my mommy-help.