I consider it an honour to have been asked to write this post; when Lucia called me, I thought it was a joke. My first feeling was that my post would not be good enough. My second thought was that somehow I was benefitting from this privilege thanks to the drive of so many, so many voiceless young people -- autistic children like my son Andrea, who teach me the most important things in life. And I would like to thank them all for my presence here.
I am a father who found himself managing a storm -- two storms, seven typhoons that blow at once and incessantly, destroying the importance of so many things that I once believed were crucial in my life. In my case, the desire to never give up and, most of all, an unwavering positive energy, the same energy that each of these disabled kids need, led me, against all odds, to take my son and bring him with me on an adventure many dream of: to ride across the three Americas on a Harley Davidson, without specific destination and without a schedule, like two gypsies, in defiance of autism. From a problematic place, we invented our own fairy tale!
From that story came the book: Don't Be Afraid If I Hug You, fruit of the fantastic work of Fulvio Ervas and my travel notes, where I kept track of chronicles and thrills of the journey. The book has been very well received by readers; maybe because it offers a different vision of young people and their disabilities, maybe because it is loaded with love that sometimes is missing these days, maybe because it's a story of pure adventure, irony, and simple truth. And if this book is translated into many different languages and if the international production of a movie is already in the making, it means that something good has been done. This feeling pushes me to promote it as widely as possible because I received so many signs -- from parents and organizations -- that made me realize that, thanks to the book, something began to change.
While thinking about what I could write for this blog to describe what autism is, and disability in general, for a child that faces life, I thought of this: imagine that you are driving a car. The car is your body and it is through this car that you move to achieve anything in life. You are very aware that you need to turn on the engine, get started and spin the steering wheel to get on the road. But what happens is that when you start the engine, the horn sounds... and when you adjust your seat, the car starts moving forward... when you accelerate, the car goes backwards... you hit the turn signal and the doors open... you know what you have to do, you see everything, but nothing works the way you want it to. You try again and again, you kill yourself trying, you cry, you scream out of desperation... people look at you like a fool, they treat you like a fool because you act strange... and you try again and again but this car they gave you doesn't work. Maybe they gave it a wrong additive (a vaccine maybe?) and it broke down, no one knows how to fix it, people look at you and pass by with their own perfect cars -- machines that respond perfectly to their every command. You decide to get out of the car... you start opening the door, but the car starts moving at a furious speed... Help!!! Then at night, your tears wrinkle your pillow, you can't fall asleep and you wonder about how to get out of this confusion. You wake up and the nightmare is still real, for your entire life. Forever! No. Not forever?!? That is how I would describe autism.
This is why the foundation was created, the foundation of which I have been the president since 2005, the year it was created. This foundation has never been about projects, cures or therapies -- we don't organize congresses or conferences and we don't specialize in medicine or science. What we specifically do is raise funds to support projects for autistic people, involving entrepreneurs from every region. We form groups of 30 to 40 companies for each region, and each gives a small monthly share continually. The sum of these shares goes to projects that would otherwise never be financed, and allows businesses to grow closer to social issues. Right now, we are financing nine projects involving 200 entrepreneurs from the regions of Treviso, Padova, Vicenza, Brescia and Milano, but we are already getting active in other regions. Those projects are carried out from four hospitals and five parents associations (everything is explained on our website).
In exchange, the foundation publishes every month in daily newspapers (Il Sole 24 and Il Corriere della Sera, and prestigious local dailies) the actions in detail: the donated funds, who manages them, how they are spent, and what is the status of the funded projects, monthly, publicly and with total transparency so that every company knows exactly where its shares go. At the same time, on every page we give visibility to the companies that allow this all to happen, The message we are trying to communicate is that social work cannot be improvised, or cannot be realized with a large donation around Christmas time to then stop thinking about it: social work has to be managed like a company, with specific contracts, predictions of revenues and expenditures and people who work being fully responsible for what they do 365 days a year.
We tell the entrepreneurs: do your work, do it well and concentrate on your profitability, but with a smaller focus on the foundation, andwe will take care of the social engagement of your company with professionalism, keeping you aware of everything that happens with the money you give us. Yes, because many business owners do not invest in social projects because they wonder about where their money will truly end up. To them, we answer this: if everybody would invest 0.1% in social projects (time or money), I am convinced that many daily management problems would be resolved within our communities; support to the families, projects for the people would be offered. We wouldn't need to make demands or protest to our communities, provinces, regions or entities that are, today, unable to deliver all the answers on a financial or medical level. Managing social work with love, giving a little bit of our time, and a little bit of our resources would bring us all to a higher level of humanity, would bring us together, exactly like civilizations I have met deep in the Amazonian forests where each village shares and supports the difficulties of the weakest in a natural and spontaneous way. Deep in the Third World, in the villages kept separated from progress of civilization, I saw the strongest form of love, education, respect for one another. If we followed this example, our institutions could devote themselves to research, the latest medical discoveries, studies, and offering the financial resources necessary to make sure autism, as well as the other horrible diseases (HIV, etc), would be understood and defeated by science.
I would like to specify that I am only a dad, like any other dad, not quite able to discuss medicine because I don't have the expertise to do so. I can't suggest a cure, because the thousands we tried on my son in the last 15 years have been useless, if they didn't worsen his case. I won't be able to sustain this blog because my two sons, autism, the time I dedicate to the foundation, in addition to my work, unfortunately do not leave me enough time to spend on all those other things I would like to do, and I apologize for that. I hope, on the other side, that I can offer you through this post my positivity, my vision about fathers and sons dealing with autism, and simply give my testimony on disability and handicaps through the eyes of a father and the emotions of Andrea, my son, hoping that this post, as well as our entertaining book, can gather our worlds a little closer.
Speak to you soon,
Kind regards,
Franco
This post was originally published on HuffPost Italia and translated from Italian.
The only person here misinformed is those that refuse to see him, including the high functioning like yourself.
I know the words being switched around convey different meanings, but that's precisely
the reasoning I've heard in defense of both terms. It depends on the philosophy of the autistic person. Stemming from conversations I've had with friends, they have very good points for choosing one term over the other.
Personally, my children have not voiced their preferences yet, and I prefer not to speak for them. Whatever they choose to call themselves in this journey of life will be fine by me. Fair enough? :)
noun
malattia disease, illness, sickness, ailment, malady, complaint
morbo disease, illness, epidemic
male evil, bad, hurt, wrong, harm, disease
moria blight, disease
So it seems that Antonello specifically chose to compare autism to "the other plagues of our century." It's this kind of self-martyrdom coming from some of the particularly vocal neurotypical parents- all the while dehumanizing neurodivergent people they claim to champion- that Huffington Post publishes all too often (Jenny McCarthy, et al.) It's hard to take Huffpost seriously as a standard-bearer of the progressive left when its editors choose to publish so many examples of ableist hate-speech.
I have an ASD but I have a son with AD. The two are very different. So called advocates for us seem to always want to ignore the AD population. They exist. Wake up and learn about them before you speak about or "for" them.
I honestly have to wonder whether any autistic people at all were consulted in the creation of these concepts.
And worse, it's yet another pitch for another book and yet another autism organization that will probably completely exclude the opinions of people who are actually autistic.
Autism isn't something you can "defy" or "defeat" or "cure".
It is nothing like HIV. Guess what! As I'm sure you know by now, Autism isn't fatal!!!!
And it is NOT a "horrible disease". In fact, it's not a disease at all! It's a neurodevelopmental disorder!
We're not "storms" or "typhoons"! We're people! Your kid is a person too!
Treating someone like the entire way the perceive the world is diseased is horrible.
Subjecting a child to "thousands" of quack "cures" in an attempt to make them anyone but who they are is horrible.
Sending someone the message that who they are and how they interact with the world will never be good enough or equal is horrible.
Neurotypical people who act like they know more about what it's like to be autistic than autistic people do are HORRIBLE.
"Voiceless young people". Autistic people communicate. Even non-speaking autistic people communicate! And it's not hard to find their words online and in books. And our words are worth far more than these.
Fanned and Faved!
Good day, and good luck.