By Dan L. Edmunds, PH.D.
They said to persevere. I began to perseverate. They discouraged me.
Be joyful they said. I flapped my hands with a joyful feeling. Not like that they said.
They used a lot of words whereas I had not many. They said I needed to speak like them and when I did they said it was the wrong words…
You need more friends they said as they forced me into the circle of bullies they called my ‘friends.’
You need to be independent they said. So I tried. No, not like that. No, you cannot possibly do that.
Share your interests they said. So I did. We do not find that very interesting they said. Stop repeating yourself!
You are in your own world they said. And with that final statement, it occurred to me- their world is not kind. Why is it better? Why must I be like them?
So whereas they refused to embrace or understand my world, I was forced to assimilate into theirs, each day giving up a part of my very being.
It was then I decided to be empowered, to embrace that which they refused to embrace, to be as I was, am, and will continue on to be. And I sought to share a piece of my world with those who dare might understand.
The Road to Autistic Empowerment
There is a gradual a process in the ability to adopt an attitude of autistic empowerment. It begins with the idea that autism is a thing that is to be eradicated. This is ignorance.
I do not blame some persons for holding such an idea initially as it is pervasive in the messages in society and maybe all they initially know.
From this emerges the idea that one might be able to accept autistic person but has an attitude of pity and feels bad that they are different. This is tolerance.
The next stage is where one is able to see autism as not a thing but a mode of being the person. This is awareness.
Beyond this one begins to not focus merely on challenges but to also see strengths. This is acceptance.
One then starts to understand the diversity in means of communication and no longer expects the autistic person to conform to contrived standards of communication. This is a furtherance of acceptance.
From this point, one is able to incorporate respect, dignity, presuming intellect, embracing diversity, and promoting self-advocacy. This is empowerment.
So one moves from ignorance to tolerance to awareness to acceptance to empowerment.
Autism is Not a Disease
Autism is not a disease or an entity. It is not something that we must seek out to eradicate. Rather, it is a mode of being, the word “autism” simply being an umbrella term to describe how one relates (or does not relate) to the world. When autism is viewed as an entity, a “thing,” professionals are then led to developing programs that seek to transform the person into something they are not, nor will — or can — ever be. This errant perspective may prove dangerous, as it can function as the impetus to alter the affected person by force, coercion, or manipulation.
If an American travels to a foreign country and knows nothing of the culture or language, he is bound to struggle. If an American travels to a foreign country having learned something of the language and culture beforehand, then relating to others and navigating one’s way become much easier. This illustrates the direction in which I believe that programs to aid autistic persons should be geared — not to change the individual, but rather to help them to be themselves, while also having an understanding of the “mainstream,” and being able to navigate within that realm.
An Empowering Approach to Autism
In my approach, there are some core principles that I find of utmost importance:
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Presume intellect: Because a person is nonverbal or struggles with communication does not mean they are not intelligent or have nothing to say. Their unique strengths and passions must be explored and utilized.
Behavior is communication: In my opinion, the psychiatric community may be making a grave mistake when it simply seeks to “shut down” or suppress what it judges to be “unwanted” behaviors with powerful psychiatric drugs. Behaviors, even those which may be deemed “unwanted,” could be, for some, the only means to convey their needs or distress.
Self-Advocacy: If professionals, friends, family members of the individual, and people at large wish to understand autism, there must be a willingness to enter the autistics’ world, not force them to enter the “public world” deemed acceptable. We must validate self-advocacy and seek knowledge about the autistic mode of being from those who actually live it each day.
Foster Relationships: To help autistic persons forge emotional connections, make their way through the mainstream, and learn new skills, the keys are relationships. We all must be inclined to forge a bond with the person, to truly seek to understand his experience, unique world, and how he finds meaning — that is, to get to know the autistic individual as a fellow human being. Once a bond is forged, a common healing ground can be created.
Respect: It is paramount for respect to exist and abound, which means that we do nothing to force, coerce, or manipulate those with autism. They should be regarded at all times as being worthy of dignity. Again, the “outsider’s” role is to advocate for and support, not seek to modify the person into someone they are not, or need not be.
Dr. Dan L. Edmunds is a self advocate. He completed undergraduate studies at the University of Florida with major in Comparative Religion and minor in Sociology. He received a Master of Arts in Theology from the University of Scranton and earned a Doctorate of Education in Community Counseling from Argosy University. He has served 22 years as a Behavioral Health Counselor.
Re: The Road To Autistic Empowerment.
Well, that was a really good article. Thankyou so much. I totally agree. I have 2 sons, one ADHD/GIFTED and the other has Asperger’s and ADHD, although l hate those terms! They are my sons….kind and loving, gifted and very intelligent. Thankyou for the work you do, and your advocacy for others.
Thank you for your kind comment.
Excellent
Thank you for sharing sir
Excellent survey, Dan.
My Autism is aggravated by ADHD making all your points the more difficult, least but not last writing: I can’t stay focused for more than 20 mins in a row hence trying to advocate in the most possible essential way.
It s commendable what you say about Acceptance though in my experience that will never fully happen since we re heading more and more in an ‘image society’ where diversity is shunned, at least in Japan where I live with my Japanese wife.
Also, I noticed that nobody ever talks of ‘low-functioning’ Autism.
I place myself in-between: I couldn’t finish Med-school. It s very hard to hold down a job for me and I m setting up my business with my neurotypical nurse wife.
I m very good at humanities though I have a hard time with technology. I still don’t understand how to post my blog on this platform.
I appreciate your help.
I m active on Facebook and hope to interact with you.
John
Thank you for sharing.
Too often I have seen those grim prophesies paid out to parents of children in the spectrum. They will never do this. They will never do that. I have seen where resources were limited or persons in the spectrum languished in school or other systems that failed to recognize their strengths and dignity. I have seen programs that were simply degrading to persons in the system. But I know I overcame much and I know there is still much work to be done. I was a ‘flapper’ as a child, I did this when frustrated. I toe walked. I had two years of speech therapy for an impediment. I had difficulty with motor skills and required occupational therapy. I preferred adults as a child. I had an odd fascination with world religions and cultures from an early age. All of this could have been seen as limiting. I did not allow it to be. I sought out those who would be supportive, I sought to find my niche. Yes, there have been struggles, and there continue to be. But I went from a speech impediment to being commended for my lectures. I went from trouble with motor skills to being able to mountain bike 25 miles treks at a time. I earned a Doctoral degree. I have served fellow people in the spectrum and work for alternatives for persons with serious mental illness. I was the youngest legislative aide in the Colorado Senate. My knowledge of world religions and cultures helps me to understand us all as a human family. I still may ramble and bore people, I still don’t like certain textures, I dislike crowds. But we all have our quirks and we need to focus more on our common humanity rather than label persons as defective. Let us strive for the empowerment of persons in the autistic spectrum, but beyond that let us uplift each other always.
I was drawn into this from the very first statement! I am familiar with all of these feelings!! Thanks for so eloquently putting it out there!!!
Thank you.
This is the admin. I’m testing because someone is having trouble commenting.
Okey-dokey!
Many thanks for your strong advocacy and clarity Dan.
Physicality can be a daily challenge for some of us. My inner, personal research, suggests that my Asperger’s may be “a symptom or result of a bad fit” between my spiritual nature and my physical nature.
I work from the understanding that Aspies are powerful and complex spirits, and when we are required to take on human bodies in order to operate in the material world, some of our wilder energies stick out, and this bad fit may be observed by others who do not share this problem. It’s like wearing a suit that doesn’t quite fit, and sometimes it goes unnoticed, and other times it becomes the focus of unwanted attention. Some of us work very hard and long, just to get a better fit, to avoid the attention.