For parents,\u00a0 a child’s “pathology”\u00a0 or diagnosis may sometimes seem to encompass the whole world.\u00a0\u00a0 You’re in the trenches, dealing with it every day–the child’s behaviors, the child’s struggles, the reaction of those around you to the child and the child’s struggles, and your struggles, the therapy appointments, the judgments so many people make about you as a parent and your child as a child.\u00a0\u00a0 Anyone in any of life’s “trenches” (whether it’s a health or economic or social trench)\u00a0 begins to feel that the sides of the trench and the shells raining down from above define reality.<\/p>\n
But that’s not the case.<\/p>\n
April is Autism Month.\u00a0 What I want to say about Autism Month is that autism (or Asperger’s) isn’t the only “A” word, nor is it the most important “A” word.\u00a0\u00a0 Attitude is another. \u00a0\u00a0 Whether a child carries an autism-spectrum diagnosis or not, the most important A word in that child’s life–and in that family’s life–is Attitude. \u00a0\u00a0 If a family is convinced that having an autistic child is a terrible, horrible, unfair burden on their otherwise perfect life…it will be. \u00a0 If I family is convinced that having an autistic child is a challenge they will meet–a challenge that offers a chance to learn and grow…it will be. \u00a0\u00a0 If\u00a0 family is convinced that every child, whatever the diagnosis, is a real human being deserving of respect…that child will be.<\/p>\n
This is not to say the family of an autistic child can ignore the problems that autism creates–for the child and for the family. \u00a0\u00a0 Or that it’s not (often but not always) more work for the child and for the family. \u00a0\u00a0 It is. \u00a0 But the kind of whiny self-pity and downright dishonesty shown by some families (and displayed publicly in, for instance,\u00a0 Families of Adults Affected by Asperger’s\u00a0 Syndrome displays an attitude that creates more problems, not only for that family and child, but for everyone with a family member on the spectrum.<\/p>\n
On the FAAAS\u00a0 website<\/a>, this organization states it is\u00a0 advocating for parents and siblings of those with Asperger’s (though it is soon clear they mean anyone on the spectrum, as shown in their link to this article<\/a> about autistic girls);\u00a0 it\u00a0 promotes the idea that prolonged contact with children or adults on the spectrum is inevitably painful and harmful to family members and friends, via something they have called “The Cassandra Syndrome.”\u00a0\u00a0 Links to articles like this one<\/a> suggest that a parent with Asperger’s Syndrome is likely to be a bad parent, rigid and unloving, or that all the “fault” in a difficult relationship lies with the person on the spectrum, as here<\/a>, and the person with no diagnosis has no responsibility for whatever difficulty exists.\u00a0\u00a0 It is clear that some people are looking for a diagnosis to stick on a spouse or child or other person they can’t get along with, and thus want to believe that these people are undiagnosed Asperger’s.<\/p>\n Every bad Attitude\/Opinion\/Belief\u00a0 in the world can dredge up someone with a doctoral degree to bolster the error…and “blame the other guy” is no exception.\u00a0\u00a0 But in this instance, the genuine and undeniable difficulties of managing life with someone on the spectrum have\u00a0 been coddled into a wicked combination of self-pity and political activism.\u00a0\u00a0\u00a0 Generalized negative statements about autism, Asperger’s, and everyone on the syndrome has expanded into attempts to interfere with the lives and legal rights of those with those diagnoses.\u00a0\u00a0\u00a0 From an attitude of self-pity,\u00a0 these people have progressed to an attitude of hostility and blame.<\/p>\n Autism Month is supposed to focus attention on Autism Spectrum conditions so the public can be educated…but if that education is provided by those who are hostile to autists and Aspies…it can generate social hostility and legal action that is not justified on the basis of fact.\u00a0\u00a0 Opportunities for any group close down if that group is perceived as particularly difficult, violent, incapable of forming healthy relationships, incapable of managing affairs, etc.\u00a0\u00a0 Negative advocacy–lobbying against people on the autism spectrum–means they are perceived negatively by others, including in legal matters.\u00a0\u00a0\u00a0 All disabled people have fought to retain their legal rights–their right to be heard in court, to have their testimony taken, not discounted on the basis of their disability.\u00a0\u00a0 They have fought to retain (or regain) the right to marry, live independently, travel, hold jobs, have children and raise them.\u00a0\u00a0 That includes people on the spectrum.\u00a0\u00a0 It is a giant step backward–no, it is a giant LEAP backward–for anyone to advocate restricting opportunities by diagnosis.<\/p>\n Do families need support and understanding?\u00a0\u00a0 Yes, but not at the cost of opportunities for their member on the spectrum.\u00a0\u00a0\u00a0 This is not, never was, and should never be, an either-or argument that pits families and persons on the autism spectrum against one another.\u00a0\u00a0\u00a0 It is possible to support families in the trenches without denigrating the person with the diagnosis.\u00a0\u00a0 FAAAS, with its emphasis on the greater suffering of the families, and its ignoring of the suffering of the person with autism or Asperger’s, has taken that giant leap backwards into the era where anyone with a disability was seen purely as a burden, never as an opportunity for growth.<\/p>\n","protected":false},"excerpt":{"rendered":" For parents,\u00a0 a child’s “pathology”\u00a0 or diagnosis may sometimes seem to encompass the whole world.\u00a0\u00a0 You’re in the trenches, dealing with it every day–the child’s behaviors, the child’s struggles, the reaction of those around you to the child and the child’s struggles, and your struggles, the therapy appointments, the judgments so many people make about 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