A Father’s View of Autism — The Very Opposite of Disability
All too frequently I come across lists of autistic attributes written by those attempting to educate and persuade audiences in one direction or another.
We need to be cognizant of producing these indexes which more often than not are gross generalizations. The danger, of course, is reaffirming perceptions as most will focus on them rather than digesting accompanying information.
We are no less diverse than any other group of people and just as others in history have sought and achieved inclusion, ours has only begun. Those on the spectrum fortunate enough to be included by family, school system, and community are no “higher maintenance” than anybody else.
The two have equal omnipotent challenges at hand:
1. Society – to embrace an inclusive culture that educates, promotes and embeds meaningful involvement where everyone adds value.
2. Spectrum – to strive for understanding, compromise, education and self-management.
Both parties are already stretching out to one another and to this we must nurture — yet both still need to make concessions for the grip to become firm.
For the fathers, prepared to put in the hard yards, the gratification is boundless – irrespective where on the spectrum your child may be.
The rewards are considerable.
A few pointers to take with us on our pilgrimage:
1. Be there. Every day, sporting events, plays, assemblies and times they need us.
2. Don’t let your wife be a warrior mom alone. Help her, support her and show her you are a warrior too.
3. Deal with and conquer whatever guilt or denial we may have. The sooner we can truly accept the situation and take power over it, the better.
4. Transfer that macho pride we have for ourselves into unconditional pride we have in our children. Hug them, kiss them, wear goofy birthday hats; no matter who’s looking.
5. Never give up. No one is born a perfect parent and no one is ever ready to hear their child has special needs. Just don’t give up, you’ll make it.
6. Listen, listen and listen some more. You’ll be inspired like never before.
We took an early decision to provide our Aspie daughter every opportunity afforded her brothers and sisters. We chose not to wrap her in cotton wool, make excuses or expect special attention. We didn’t want to change her, fix her, or force her to be “normal” — refusing to teach her ‘tricks’ so as to be successful or accepted.
At the tender age of 11, Amy is her own person, funny, expressive and wonderfully influential. We do sometimes reflect how easily it would have been to contaminate our beautiful flower. Key is trusting the child and yourself in making the right calls for there is no generic resolution in dealing with autism.
There are countless support groups and organizations — some more deficient than valuable, with hidden agenda and goals. Take the time for research as this will add value to your ‘gut feel’ – of which there is no greater indicator.
We are exasperated by the pathologization of autism and wary of caretakers who want autistic children to excel in neurotypical ways. There is no humiliation in not being like others if honor, respect and acceptance of who they want to be are evident.
Schooling is critical (whichever format deemed appropriate). We chose a small town with suitable schooling so our daughter would be an integral part of a community moving through the system with familiar faces — primary school being the most important in terms of inclusivity. She is treated as an individual who is allowed to learn, progress, and grow.
We don’t waste energy being hostile towards autism but rather advocating the positives that it can bring to everyone’s lives.
We will do everything within our power and influence to ensure she is free. Free to choose a life she desires, free to access all, free to be herself.
Her neurology a gift, not a curse.
There are many facets in the battle to educate and strive for the unconditional inclusion of people with autism. It is an exhilarating journey of inspiration and reward— educating, advocating, debating and researching yet filled with frustration and exasperation.
However there exists a dark side.
A despicable group that prey on the desperate and vulnerable with no goal other than profiteering — promising miracle cure and instant relief. It is all our duty to get into the trenches to expose these unscrupulous low life for what they are.
Autism, the lifelong neurodevelopmental disorder marked by a range of social and communication differences, has seen its share of reckless claims about causes and cures.
No doubt we have all encountered the ‘cure’ for autism, not just aspects of it mind you, but of the entire spectrum – akin to claiming a cure for blue eyes or stupidity. The world is full of con-merchants looking to make a quick buck at the expense of the vulnerable who grasp at every perceived opportunity.
Truth is, there isn’t a quick fix, a miracle cure or even a silver bullet. Autism covers the entire spectrum of human diversity and each and every person is unique – some go as far as suggesting Autism Spectrum Disorder (ASD) is a normal, natural variation of the human genome.
We must guard and speak out against the faux guerisseurs (false healers) who lure unsuspecting, susceptible family members to part with hard earned cash.
That is not to say we shouldn’t be open to ideas, suggestions and vigorous debate on the subject, but we must be skeptical of those looking for profit or notoriety. The autistic community has already made a huge contribution to the world, more so than most; the least the rest can do is support and celebrate their existence.
The goal is not cure but inclusion and understanding.
To insist on inclusivity we must be seen to embrace it at every juncture and be prepared to accommodate and accept that small steps are better than none at all. To reward endeavor no matter how modest, to applaud intention and mentor at every opportunity, otherwise we run the risk of hypocrisy — a damnable fate that will set back progress incalculably.
In the spirit of Julius Caesar’s famous phrase “alea uacta est” (the die is cast) on crossing a point of no return, we (autism), must do the same — It’s Time to Cross our Rubicon.
In doing so we must be clear on what it is we stand for, who we allow to represent us, what ethos we embrace as well as our level of integrity. Self-reflection is key for a clear message of what we stand for is communicated to all.
Idealistic perhaps, but a start wants to be made of weeding out the profiteer, to eradicate the martyr, silence the naysayer, expose the quack and stifle the agitator. Ironically excluding so as to be inclusive — for they add no value but rather distract and inject doubt to the purpose.
Communities thrive according to their collective integrity through individuals actively participating toward the same goal. It is up to each and every one to play their part even if no more than pressing the quintessential ‘Like’ button. This enhances probability at impressing upon others our potential to contribute inclusively.
This time of year brings a combination of cheer and reflection for me. My daughter now prepares for secondary school having conquered the battle to read and write. In turn, she has taught me more than I can conceptualize about love, compassion, trust and determination — that hope exists eternal.
I cannot fathom where the notion that people with autism are emotionally challenged originated or why it perseveres. I suspect it has to do with ignorance and prejudice by that strange breed of so-called neurotypical people.
It is not often I’m lost for words or lack the ability to share my feelings but humbly admit that I have never experienced such a deep respect and love for my daughter and her ASD friends. For bequeathing upon me the incomparable gift and honor of standing up for a transcendent cause.
It is a good time to reflect on our gains and to shore up defenses for what the future holds but more importantly it is time to enjoy and cherish our special people and count our blessings.
Autism is the very opposite of a disability.
This article was featured in Issue 33 – Let’s Get Moving and Stay Healthy