There is no hard and fast rule about if or when to reveal one's neurological status to others. There are usually pros and cons to telling people. It takes both logic and intuition to know when to tell people. Many times we need to tell people if they are our employers, doctors... People can become more understanding, at least on the surface, but to many bringing up the subject can come off as self-handicapping, self-pity, or lead to being labeled and treated differently. It can lead to self-fulfilling prophesies based on their assumptions. If our actions or performance later on shatter their assumptions about Autistic people, people will then think we made it all up to be "fashionable". In this blog a writer explains some of their concerns in better words than I can: http://www.journeyswithautism.com/category/self-advocacy/
Somewhere else on this blog is a section for Autism Myths, further down on this list it mentions that just because someone can blog doesn't mean they are not Autistic. I will add that just because someone can breathe doesn't mean they don't have Asthma.
Now for part 2 of this post, "Self-Advocacy". This is another fashionable sounding yet controversial word. The term has roots related to other Developmental Differences. As Autism awareness has become faddish, part of the jaded backlash I have been getting whiff of is a "rolled-eyes" attitude toward self-advocates. The first thing that I think of is "I'm one of those self-advocates.". I'd like to clear up some of the misunderstandings about this term and most of all explain the "self" part of the word. No one is perfect, but when I self-advocate I try my best to be fair, inclusive, yet I also mention that I only speak for myself. There are many gifted Autistic people who unknowingly assume that their issues and experience is universal for everyone on the spectrum. Not all self-advocates are alike and we are not all part of one monolithic organization. There are controversies and division in the Autistic community and everyone has different views. Their are some self-advocates who feel that the professional community is trying to cure them and would rather be accepted and then left alone. They have a right to their opinion but remember they are not the entire Autistic community. Another place where there can be a divide is between professionals and self-advocates, and between parents with Autistic children and self-advocates.
As far as the professionals many are receptive on the surface but get hot under the collar when they hear self-advocates thinking they are not qualifies to give advice on the topic without the appropriate title after their name. This can turn into elitism, but notice on this blog how I put a mini-disclaimer saying that my intention is to not give medical advice. If some people had their way it would be illegal to advise someone to share a family recipe without proper credentials in the culinary industry. Although I have both life experience, work experience, educational experience, and years of my own research on Developmental Differences I graduated with a BA with no post graduate credentials. I also know that BA's in Social/Behavioral Sciences are a dime-a-dozen and I understand that I don't always know more than the professionals. I do my best to respect people's professionalism but I also have a lot to say and only ask that people hear me out. If I am wrong about something I am open to correction but there are ways to correct without totally discrediting or belittling someone.
On the issue of parents. I understand how some parents with severely Autistic children feel that self-advocates trivialize what they are going through. While anything is possible many parents are worried about how to keep their kids safe and are trying to accept that their child may never talk or become the next Dr. Temple Grandin. I like working with parents, but realize that I am sometimes on this ice and can easily say the wrong thing. Many times self-advocates can get defensive with others in the Autism community whenever someone else makes a faux-pas or a comment that they take exception to. Usually the parents involved love their children (some parents may be on the spectrum themselves) and no one wants to be called a bad parent. We all have to accept that everyone will put their foot in their mouth at times and to keep their eyes on the big picture. Not all self-advocates are the same and remember that just because somebody talks doesn't mean they are not on the spectrum and just faking it. Also remember that Autism self-advocates are...Autistic and don't always realize how they're coming off- me included.
In my experience as an advocate I have had mixed receptions ranging from warm enthusiasm to rolled eyes and subtle cynicism. Everyone seems to be supportive and receptive on the surface, after all Autism is in vogue at the moment. I don't get any overt hostility toward what I'm doing but I can sense jadedness and cynicism from a mile away. To many people I appear perfectly normal on the surface, others can tell I have Autism or something long before I tell them. Many times the pendulum swings like crazy, people will be very curious about what I have to say and most appreciative toward what I share, and then others others seem to get nauseous thinking I don't know what I'm talking about and I am using Autism to get attention, pity, and unmerited credibility. I am not self-diagnosed and my neurological status is well documented dating back before Autism/Aspergers became fashionable. Those close to me know I'm not making this us to excuse my faults and weaknesses. Also nobody is going to want to argue with me about this because they know I will politely defend myself and nobody wants to appear insensitive in today's social climate. I do sense my share of passive-aggressive energy however. I also want to note that self-advocacy is not my career nor a major source of income (other than an occasional stipend for a public presentation). This blog for example has no ads and is not monetized. I don't "make a living being Autistic" and no one can say I'm trying to "cash in on the fad". Instead of reacting to people's jaundiced eyes and fiery darts with blind defensiveness (which I can't really defend much since I'm rarely confronted), I try to empathize with why they are so jaded. I mean I can be a cynic at times myself but try my best to temper it with fairness, empathy, and critical thinking.
There are also different elements of self-advocacy and not all are addressed in all definition. Many use the term "Autism rights" and view it as a civil rights movement comparable to that of African-Americans and gay rights. (BTW comparing any one movement to another can be playing with fire even if there are some parallels and mutual sympathies.) For me I tend to focus on awareness, acceptance, mutual empathy, neurodiversity, and educating people, learning what I can and sharing whatever I can. I try my best to be patient with people's ignorance without being pedantic, as I may have ignorance of my own. I for example support efforts to help those with Muscular Dystrophy or Parkinson's Disease, but I can't say I know a lot about those conditions (I don't have either.) and therefore I'd want people to be patient with my ignorance. I may sign an occasional petition and I support all aspects of self-advocacy but I'm just saying there is more to it than "Autism rights".
Somewhere else on this blog is a section for Autism Myths, further down on this list it mentions that just because someone can blog doesn't mean they are not Autistic. I will add that just because someone can breathe doesn't mean they don't have Asthma.
Now for part 2 of this post, "Self-Advocacy". This is another fashionable sounding yet controversial word. The term has roots related to other Developmental Differences. As Autism awareness has become faddish, part of the jaded backlash I have been getting whiff of is a "rolled-eyes" attitude toward self-advocates. The first thing that I think of is "I'm one of those self-advocates.". I'd like to clear up some of the misunderstandings about this term and most of all explain the "self" part of the word. No one is perfect, but when I self-advocate I try my best to be fair, inclusive, yet I also mention that I only speak for myself. There are many gifted Autistic people who unknowingly assume that their issues and experience is universal for everyone on the spectrum. Not all self-advocates are alike and we are not all part of one monolithic organization. There are controversies and division in the Autistic community and everyone has different views. Their are some self-advocates who feel that the professional community is trying to cure them and would rather be accepted and then left alone. They have a right to their opinion but remember they are not the entire Autistic community. Another place where there can be a divide is between professionals and self-advocates, and between parents with Autistic children and self-advocates.
As far as the professionals many are receptive on the surface but get hot under the collar when they hear self-advocates thinking they are not qualifies to give advice on the topic without the appropriate title after their name. This can turn into elitism, but notice on this blog how I put a mini-disclaimer saying that my intention is to not give medical advice. If some people had their way it would be illegal to advise someone to share a family recipe without proper credentials in the culinary industry. Although I have both life experience, work experience, educational experience, and years of my own research on Developmental Differences I graduated with a BA with no post graduate credentials. I also know that BA's in Social/Behavioral Sciences are a dime-a-dozen and I understand that I don't always know more than the professionals. I do my best to respect people's professionalism but I also have a lot to say and only ask that people hear me out. If I am wrong about something I am open to correction but there are ways to correct without totally discrediting or belittling someone.
On the issue of parents. I understand how some parents with severely Autistic children feel that self-advocates trivialize what they are going through. While anything is possible many parents are worried about how to keep their kids safe and are trying to accept that their child may never talk or become the next Dr. Temple Grandin. I like working with parents, but realize that I am sometimes on this ice and can easily say the wrong thing. Many times self-advocates can get defensive with others in the Autism community whenever someone else makes a faux-pas or a comment that they take exception to. Usually the parents involved love their children (some parents may be on the spectrum themselves) and no one wants to be called a bad parent. We all have to accept that everyone will put their foot in their mouth at times and to keep their eyes on the big picture. Not all self-advocates are the same and remember that just because somebody talks doesn't mean they are not on the spectrum and just faking it. Also remember that Autism self-advocates are...Autistic and don't always realize how they're coming off- me included.
In my experience as an advocate I have had mixed receptions ranging from warm enthusiasm to rolled eyes and subtle cynicism. Everyone seems to be supportive and receptive on the surface, after all Autism is in vogue at the moment. I don't get any overt hostility toward what I'm doing but I can sense jadedness and cynicism from a mile away. To many people I appear perfectly normal on the surface, others can tell I have Autism or something long before I tell them. Many times the pendulum swings like crazy, people will be very curious about what I have to say and most appreciative toward what I share, and then others others seem to get nauseous thinking I don't know what I'm talking about and I am using Autism to get attention, pity, and unmerited credibility. I am not self-diagnosed and my neurological status is well documented dating back before Autism/Aspergers became fashionable. Those close to me know I'm not making this us to excuse my faults and weaknesses. Also nobody is going to want to argue with me about this because they know I will politely defend myself and nobody wants to appear insensitive in today's social climate. I do sense my share of passive-aggressive energy however. I also want to note that self-advocacy is not my career nor a major source of income (other than an occasional stipend for a public presentation). This blog for example has no ads and is not monetized. I don't "make a living being Autistic" and no one can say I'm trying to "cash in on the fad". Instead of reacting to people's jaundiced eyes and fiery darts with blind defensiveness (which I can't really defend much since I'm rarely confronted), I try to empathize with why they are so jaded. I mean I can be a cynic at times myself but try my best to temper it with fairness, empathy, and critical thinking.
There are also different elements of self-advocacy and not all are addressed in all definition. Many use the term "Autism rights" and view it as a civil rights movement comparable to that of African-Americans and gay rights. (BTW comparing any one movement to another can be playing with fire even if there are some parallels and mutual sympathies.) For me I tend to focus on awareness, acceptance, mutual empathy, neurodiversity, and educating people, learning what I can and sharing whatever I can. I try my best to be patient with people's ignorance without being pedantic, as I may have ignorance of my own. I for example support efforts to help those with Muscular Dystrophy or Parkinson's Disease, but I can't say I know a lot about those conditions (I don't have either.) and therefore I'd want people to be patient with my ignorance. I may sign an occasional petition and I support all aspects of self-advocacy but I'm just saying there is more to it than "Autism rights".
