Each year we provide $5 million in grants to national disability organizations which are either consumer controlled or consumer focussed. These voluntary organizations, that include citizens with disabilities, their family members and other advocates, are making a real difference in the daily lives of Canadians. We could not do without them. Your correspondence has been a welcome reminder of the need for us to work with the organizations we fund to ensure that people with disabilities have a strong voice within all of them.

We take your concerns very seriously. I understand from your letter that you do not think funding should be provided to the ASC. Based on your questions, our officials have again reviewed the file and have determined that ASC is eligible under the Terms and Conditions of the Social Development Partnerships Program. I agree with this finding. I also believe that with the growing awareness of the impact of Autism Spectrum Disorders (ASD) on the lives of Canadians, we very much need organizations like ASC. I understand that ASC is the only pan-Canadian organization advocating for those with ASD. We also need to ensure that ASC is making a meaningful and concerted effort to include people with ASD in the membership and governance of their organization. Currently, all individuals are provided the opportunity to participate in the governance of ASC via membership in the provincial and territorial societies that make up the organization. Membership in these societies confers to all individuals the right to nominate, vote for and become members of the ASC Board.

I understand that ASC has new initiatives under consideration, including the creation of a special membership category that will ensure greater stakeholder participation on their Board and the implementation of formalized focus groups to gather input on priority topics. We have been assured that these initiatives and others will be developed with a particular emphasis on including people with ASD.

I can assure you that our officials will be vigilant in monitoring ASC’s progress in this regard and will take their efforts into account in further reviews of applications from ASC for grants or project funding. I also encourage you to work constructively with the Society. Over the past few months, officials from Social Development Canada have had several conversations and meetings with representatives from ASC on the issues you have raised. We have, and will continue to strongly encourage ASC to work to address the issues you have raised.

However, neither Ms Tunis nor anyone else sent a letter "shortly" to replace the "rescinded" letter. In any case, following Mr Grujic’s refusal to consider the real issues, and an ODI official’s refusal to identify the source of Ms Tunis’ information about autism, I had already written to you. I then responded to Ms Tunis, re her apology:

Not only have you chosen not to apologize, Minister, you have not in any way explained how it is that ASC is "consumer-focused". You claim to fund only disability organizations which are consumer-controlled or consumer-focused. I see no third category specifically for autistics. I see no indication that the presence of consumers in governance is optional. I don’t see anything that says that so long as an organization does not explicitly forbid the participation of consumers in its bylaws (as opposed to in its practice), then it is consumer-focused.

Autistics have noticed that consumer control is available and in fact mandated in many organizations dealing with intellectual disability. One consequence of ASC’s effort to alert Canadian society as to the nature and "impact" of autism, and as to the appropriate role for autistics, can be seen in the statistically improbable absence of autistics (who are a significant proportion of those with intellectual disabilities) from the governance of Canadian intellectual disability and community living organizations.

The differential handling of autistics by ODI constitutes adverse treatment on the basis of disability as enumerated in the Canadian Human Rights Act. The only rationale for the designation of ASC as "consumer-focused" is the false, insulting and illegal paragraph written on your behalf by the Director General of ODI. I am mystified at your inability to understand this simple problem: other than Ms Tunis’ prejudicial paragraph, there is no rationale for the funding of ASC as "consumer-focused".

For the record, ASC’s wishes to the contrary, autism is not fatal. So the ratio of children to adults is the same in the autistic population as in the non-autistic population. Nor does the existing science support a staggering/dramatic/alarming/epidemic/skyrocketing increase in autism, regardless of the false information ODI pays ASC to distribute. The majority (75%, conservatively averaged from recent sources) of autistics have functional speech before age five, and many more autistics will develop speech afterwards. In addition, many autistics communicate effectively using non-speech forms of language. As to our inability to function in typical organizations, this is true only if the said typical organizations embrace ASC’s misinformation about the "impact" of autism. No person can function in an organization in which their existence is greeted with dread and horror, and in which they must dedicate their every effort to the concealment and eradication of their own essential traits.

Unless Ms Tunis was in her paragraph expressing her personal opinion of autism, this material was generated by ODI and has existed there as the basis for autism funding decisions. One can safely assume this information came to ODI courtesy of ASC. It is hardly credible for Ms Tunis to apologize for issuing unacceptable statements while concurrently funding and praising the organization which generates and disseminates such statements.

Ms Tunis’ declaration about "individuals with Autism Spectrum Disorder" is as offensive to autistics as an equivalent statement (they are children, they can’t speak "right", and they can’t participate in "real" organizations) made about aboriginals would be to aboriginal people. This is why a credible apology was asked for at the ministerial level. Human rights violations this blatant should not be winked at. Failing to apologize, Minister, betrays your disrespect for those your department claims to be "empowering".

I spoke with Ms Tunis on the phone shortly before receiving your letter. She greeted my concerns with amusement and bemusement, condescension and shrugs of helplessness. Clearly, the decisions have already been made. I learned that while ODI asserts it is fully aware of the contents of the open letter, and has not contested these contents, ASC’s funding was again unconditionally renewed for another year.

In this conversation, Ms Tunis remarked that surely institutionalization is a thing of the past. This is the same person who is funding the ASC policy position that a "bleak institutionalized future" is in store for all autistics—that would include me—who remain autistic.

When I asked Ms Tunis about the great discrepancy between how autistics and people with Down syndrome are treated by their respective organizations, she responded that the discrepancy results from autism being, in contrast to Down syndrome, treatable.

Here is what the Canadian Down Syndrome Society (CDSS) writes about Down syndrome:

This is interesting, since CDSS also recommends early interventions for children with Down syndrome. But these interventions are not "treatments" to erase the child’s nature. CDSS understands that Down syndrome is compatible with education, learning, and achievement. A child with Down syndrome does not have to become or to resemble a child without it in order to be healthy, educated, valuable, and human.

In contrast, ASC unethically advertises, and ODI uncritically accepts, that autistics can and must be "effectively" treated, with "medically necessary" early intensive behaviour interventions, or else we are doomed. These interventions are premised on the disordered and defective nature of all autistics and the uselessness of our essential characteristics. We are deemed to have neither potential nor worth as autistics. Therefore, it is appropriate and even admirable to banish autistics and to make us look as horrible as possible, since money will then be forthcoming to "treat" us, that is train us, to resemble the non-autistics who are valued in this society. This is perhaps ASC’s most prominent policy position.

In Ms Tunis’ version of differential disability funding, those of us not seeking or lobbying to fix ourselves and all autistics via behaviour interventions, such that we can pass as non-autistics, merit neither inclusion nor respect. We are not doing our duty, and if we are disrespected and ostracized, this is just what we deserve. Then the government pays to promote this position. And you, Minister Frulla, say bravo.

In spite of your and ODI’s insistence that I should work "constructively" with ASC, I cannot do so, since I have been explicitly told I am unwelcome. I have written many times now that I tried to work with ASC for years, going back to 1996, and that this effort was futile. I have provided many examples of how I and other autistics have been treated by ASC.

How many more examples do you require? I was yelled at by ASC Vice President Dr Peter Zwack when I suggested that ASC treat autistics respectfully. An ASC-recommended psychologist told my employer that autistics are worthless. I have so often been belittled and infantilized, and endured the denigration of all autistics, in my contacts with ASC and its offshoots, that listing specific examples is impractical. Last year, I attempted to speak with my ASC member affiliate. This would be the group I would have to join, were I to participate in ASC. I doubt my membership would be permitted. And it would be hard for me to give money to a group which many times has called me a plague, and which celebrated a woman who killed her autistic son as a role model and hero. I did try anyway. First I was shunted into "services". Then my diagnosis was changed, over the phone. When I objected, I was laughed at and told I was too stupid to understand my own diagnosis.

The onus is on you to explain to me what "constructive" means in this context. I’m aware that positive views of autism are not seen as constructive. In fact, they are seen, as witnessed by the mail received by anyone proposing autistics have worth, as being destructive and reprehensible. I won’t work with ASC to promote negative views of autism, so if this is what you mean by constructive, I can’t be constructive. Nor can I accept or promote ASC’s very recent tactic (in the public, but not in court or in its submissions to the government) of segregating a small select group of autistics with a particular diagnosis as occasionally having some worth, all the while condemning those not in this select group to hopelessness, worthlessness, and doom.

ASC’s actions have a large impact on autistics. They have made great differences in our daily lives, as you state. These differences are not welcome.

I used to be able to explain myself when I was in difficulty. I can no longer. Everyone "knows" about autism now. So I am greeted with horror or disbelief, and nothing I can say or do will rectify this. I have through the force of recent experience learned that disclosing my diagnosis in almost every situation carries severe and permanent consequences. I have learned that my diagnosis totally compromises my work, regardless of the quality of that work.

ASC’s actions have also resulted in courts, human rights commissions, and governments adopting the view that autistics who remain autistic are an expensive tragedy. These legal and political entities have been recruited by ASC-supported groups to obtain and implement programs premised on the doom of all autistics who don’t succeed, via early intensive behaviour interventions, in extinguishing our autistic traits. This has rendered many legal and political processes inaccessible to autistics who have not been "fixed" in this manner and do not wish to be.

ASC has rewarded those who denigrate and exclude autistics ("constructive", they are called), while those who hold positive and accurate views of autism have been vilified and ostracized. The rhetoric used to demean autistics has escalated significantly in recent years, and ASC has done its part in contributing to this trend. Contrary to ASC’s policy in this area, we do not benefit from being targeted by hate speech any more than non-autistic human beings would.

Minister Frulla, unless you truly believe that autistics are subhuman non-persons, you cannot believe that ASC meets ODI’s criteria for funding. Nor can you believe that ASC is anything but another barrier preventing autistics from speaking for ourselves and from participating in society.

You state that I am asking only for ASC not to be funded. I’ve seen a great deal of evidence that no one has considered the contents of the open letter, and here is some more. What I did ask for is written clearly under the heading of "Mitigating the damage". I cannot see anything under this heading that is obscure or unclear. Yet it has been ignored, in spite of these requests having been made with the support of Canadian and international autistics and our allies.

My goal in writing the open letter was to mitigate the damage to autistics resulting from ASC’s government-funded dedication to the financial and emotional needs of non-autistics. I proposed simple and effective ways to do this. Since October of last year, I have been ignored, and so have those who signed on to support this effort.

Minister Frulla, I have learned from yourself, Ms Tunis, ODI, and ASC everything that can be learned about taking an insult, and about how to survive disrespect and denigration. You are being badly advised if you have been led to believe that we will meekly return to our ignominy if we are sufficiently berated and demeaned. Our existence and survival in society are at issue, and while you are paying ASC to deny our truly extraordinary autistic gifts, one of these gifts is persistence. Autistics will persist even when you violate our rights and insult our humanity.

Minister, I am again asking you to apologize. An apology is proper and appropriate and would have been granted instantaneously to any group of non-autistic persons similarly disrespected. I also expect you to notice that Ms Tunis’ position re autism versus Down syndrome is not acceptable in a person running Canada’s disability agenda. And mitigating the negative impact that ASC continues to have on autistic people is simple. You need only to respect your own rules, and to understand that refusing to apply them in the specific case of autism is neither ethical nor legal.