resources by and for persons on the autistic spectrumhome | project | institute | library | skills | links | discussion
Autism Information Library

Re: As the REAL mother behind this event from day one!
From: Laura A. Tisoncik <>

On Tue, 28 Mar 2000, you wrote:

I was the woman, who, had the idea, to go to DC to begin with............

BOY, is this a SHOCK to see............

It shouldn't be, given that this was organized without any real input from the autistic community itself, and in complete disregard of what we value for ourselves.

You have no idea, of the heart and soul, put into this day!

That makes pursuing an agenda that ignores and offends autistics appropriate?

I have two children, both Autistic............and this day, was for all the PEOPLE, in the AUTISM COMMUNITY, as a whole, to UNITE............and to stand proud.

You can't just declare unity and have it happen. You need to make it happen first, and only then can you have it happen. This is the first commandment of coalition building. You broke it.

What you have done wrong, and why you can't have unity:

  • You disregarded the autistic community. We don't all speak with one voice. We aren't all high functioning aspies with Ph.D.s. Some of us aren't even verbal-- but we do have voices in the electronic world. The very name of the rally is an insult to many of us. You can no longer assume you'll be hearing our silence. You are going to need to learn to hear our voices.

  • Your agenda , though you deny it to us, and softpedal it at times, is to get Congress to pour money into finding a cure. I remember well the original announcements of this rally: how they talked of cures, spoke of children but not adults, and invited parent involvement-- but not ours. Even your original website was spectacularly inaccessible to autistic persons: the intense colored puzzle-piece background was too painful to look at. I remember what I had to do with my monitor and browser settings just to be able to view your site.

    If that's not still your not-very-hidden agenda, explain what your telephone number, 1-877-No-Autism could possibly mean. Explain why the word "cure" is used in your fundraising? On your website?

    For most of us, "cure" sounds exactly like "kill the person you are, but animate your body with some alien force." For most of us "prevention" sounds exactly like "genocide". And no, you don't get to dismiss us all as a bunch of meddlesome aspie Ph.D.s. We are not all that. Some of the most adamant of the no-cure people I've known are non-verbal. The closest I come to the aspie myth myself is that I've "graduated" from the campuses of Poughkeepsie State and Ypsilanti State... hospitals.

    If you want unity with us, you have to learn to compromise, not merely demand obedience. You could start to compromise by recognizing that "cure" is so offensive to many autistics that it destroys any possibility of cooperation. You would need to clearly and unambiguously remove "cure" and "research" entirely from your agenda, leaving the issue a matter of personal opinion. Soft-pedaling the cure agenda when confronted about it , without actually removing it from your telephone number, your fundraising, and every other place the agenda pokes through, and trying to hide behind warm fuzzy content-free euphemisms like "autism awareness" will not create unity... just anger, at your presumption that we would be silent.

  • If you want unity you need to give us a reason to support you. That means learning what we want (real services) and embracing a few of our goals-- not expecting us to raise awareness of , say, how much you want more respite care in exchange for nothing. That tit-for-tat is how politics works. If you're going to Washington, you ought to first learn the basic rules of politics.

    To show, their many wonders, talents, and gifts, along with the fact that many people do live very well with the DX, of Autism.

    And many people-- far more than live well-- live very badly. Many of us are now, or have been, homeless. I myself spent years living on the streets. Those of us who need assistance with daily living tasks can't get it. Those of us who need help with employment can't get it. I know one autistic adult who recently was reduced to eating coffee grounds after the parent who was her primary caregiver died.

    I have very little sympathy for the letters sent to me about how I just don't understand that their kids might run out in traffic. I was one of those kids who sometimes ran into streets, not because I didn't know that cars could hurt me, but because I couldn't always recognize the difference between a parked car and a moving car. At 42, I still cannot judge speeds and distances of cars very well as a pedestrian. I've had strangers grab me by the collar and pull me out of traffic, more than once. I even had one woman insist upon getting my telephone number and then calling, frequently, to urge me to do something about this problem.

    It was nice sentiment on her part. But there is nowhere I can turn to for help. Nowhere.

    You are eager to show the world a few token adults who look good on the outside-- while carrying the not-very-well-disguised message that our insides are defective and need to be destroyed. Most of us feel that who we are on the inside is the good and worthy part-- worthy enough to deserve support to live full lives throughout our lives, not just when we qualify to be humilated as pitiful poster children.

    We want real, appropriate, responsive adult services. Showing off token autistics denies our real lives, our real needs, and our real desires. It's just one more way to silence us.

    I also have absolutely no sympathy with the argument that there just isn't any money for adult services. Last year I set up a small international fund and energency network for high functioning adults. In the past year we've pulled a lot of people off the streets, sent taxi and food money to that autistic who was living on coffee grounds, paid the examination fees of an aspie teen whose parents abandoned her days before her high school graduation, and fed a family for a while. In a few days I'm going to be filing articles of incorporation and giving this project a formal structure. I'm an autistic SSI recipient. Why can I do this, and nobody else can? Is it my amazing superhuman powers-- or is it that the autism establishment prefers their autistics invisible and silent?

To show this great nation of ours, OUR YOUNG ADULTS, and GROW-UPS, on the Spectrum.............All SIDES to AUTISM............

I'm not a "grown-up" (spelling corrected). I'm an adult. I'm probably older than you are. I might even be old enough to be your mother. I don't need to be talked at with baby talk.

Yes, To even show, that people, can and do function very well with Autism.

Seems you all missed the point...........

No, seems you missed the point.

I am so sorry, to see this...........

It would be better you learn from it.

I am going to DC............

I'm staying home and putting my spare resources into the new corporation. There are too many people waiting in line for help.

I am sorry, that you feel that this will in anyway hurt you, by explaining to others. what Autism is..........ALL ACROSS THE SPECTRUM..........

We don't need you to explain us. We can explain ourselves quite nicely. Most of us do have voices, you know.

A day of Unity...........

Like I said, if you want unity, you have to make unity. You haven't made anything of the sort. You didn't even try. You just expected us to be silent.

Thank you so much, for your nonsupport. What a slap in the face.

It seems to me that you're the one who left out what autistics themselves want. You leave us out, you build your agenda around the very things that offend us the most, and then you say we are not supporting you?

Just one day...........TO show, how great and strong we are, united together.......

We are not united. Again, you can't have unity without dialogue and compromise.

In fact it isn't even meaningful to say "we", because you never included us as a community in your plans. Your plans for us were to "hear" our silence.

It's not hard to find autistic input. Wander over to for a start, and surf from there. You'll find plenty of us. We're big, we're lively, and we're connected. Alas for the name of your march, we aren't silent.

One day..........A moment in time............

I'm not interested in being silenced by your agenda for one moment.

I "made my voice", as I called it, after being inspired by the civil rights movement-- you can't speak out against injustice if you can't speak. You're giving me one more good thing to use it for.

I think you all missed the point.........I am so sorry, that you missed mine........

Oh, I got it. I'm hyperlexic. I can read that telephone number.

To bring "Awareness to AUTISM".

Awareness for what purpose? A rally in Washington? Hmm... it just so happens that my "area of special interest" is politics. I seem to remember that, generally, groups that want to bring public awareness to an issue spend their money on public service announcements and similar campaigns. Groups that want to bring their agenda to Congress (money for a cure) generally rally in Washington. It's a simple matter of cost-effectiveness.

And awareness of what about autism? Of our "silence"? Of how pitiful we look on your posters? Of every imaginable heartstring-pulling stereotype you could pull out of a hat for fundraising purposes? Or maybe that those of us who are adults all have three Ph.Ds and a Nobel Prize and no longer need help? I would prefer the world be aware of something bona fide about autism. I, after all, have to live with the prejudices you're trying to build.

Nothing More...........Nothing Less...........Period.

The word that comes to mind here is "liar". I can read.

Any Questions ?????????

Carol J. Fruscella

You never had unity. You left us, our needs, and our priorities out, as usual. You've chosen to insult and humilate us with everything from the name of the rally to the poster children to the appeals to pity. You are blatantly lying when you say that you're only about "autism awareness". How on earth can you say that you are shocked by this?

Laura A. Tisoncik

home | project | institute | library | skills | links | discussion