A friend of mine commented to a post below and it merits a larger discussion here.
What is neurodiversity from someone who believes in it?
I know, I've thought I had covered it fairly exhaustively, but it never hurts to go over it again, since it's constantly being inaccurately described and redefined by those who would eradicate autism(s) completely.
Part of the problem here is semantics. We aren't agreeing on operationalized definitions and are consequently not talking about the same things.
Part of the problem are the emotions on either side of the equation.
Part of the problem is that there are two different populations being represented as well: family members who are dealing with autism and the individuals who are autistic.
So, definitions seem required.
Definitions (got that; it's my definition, it's what I'm talking about. I've operationalized it and it means you need to base your discussion of it on that definition or you need to operationalize your definition so we know where we are talking about different things):
Neurodiversity: all people, regardless of their disability, difference, issue, neurological wiring, have inherent value as human beings.
They are entitled to respect, dignity, and equal treatment before the law.
Marginalizing, minimizing and otherwise abusing people who are not "neurotypical" as defined by societal customs is morally and ethically wrong.
They are entitled to compassion and the right to make decisions about their own lives as they reach emancipation age. Autonomy should be respected. This does not mean permissiveness as a parent and doing nothing. We're talking about adults here, not children.
Onto children: as children grow and become able to understand their condition/disorder/disease that those deicisions that have been the purvue of the parents shifts as the child reaches emancipation to become the now adult's decisions. This recognizes that profound mental impairment will preclude an individual's ability to make all decisions. Those decisions should be made by the guardian with the individual's needs in mind and not the caregivers.
As neurodiversity on this site primarily deals with autism, let's operationalize that as well:
Autism is a spectrum which is currently diagnosed through a cluster of behaviors. It involves a wide range of functional levels and impairments. There is a triad of typically recognized impairments in the social arena, in the communicative area, and in the range of interests and behaviors (as defined by the DSM-IV-TR). Neurologists now recognize that there are at least sixty different disease entities in persons meeting the requirements for autism (Coleman 2005). It is believed, by neurologists researching it to be primarily genetic in nature, and that most autisms are in place by birth. Environmental triggers are involved with in utero trauma that may either be causal in nature or worsen the severity. Researchers recognize the incompleteness of their knowledge regarding the cluster of behaviors and different neurological wirings that we currently call autisms.
This is the background I am viewing autism from:
I do not consider, based on the preponderance of evidence available that autism is caused by vaccination (see Immunization Safety Review: Vaccines and Autism, http://www.nap.edu/catalog.php?record_id=10997#description).
However, as I have written before:
Just a reminder that I do believe that serious adverse reactions to vaccines do occur.
I believe that these should be taken seriously.
I believe that all possible research to minimize the risk should be done and that those who are at risk should NOT be vaccinated.
They should be protected by the herd immunity generated by the majority of people being vaccinated provides.
I believe that vaccination in itself should be seriously considered and the overall risk assessment should be weighed. Are the risks in general of vaccinating the population worse than the risks the disease itself would convey? Then don't use that vaccine.
Back to autism:
I do not consider autism to be fundamentally connected with "gut pain" and anytime someone refers to leaky gut, gut problems, etc, firstly, I am annoyed at the lack of clinical terminology (and when it's coming from a doctor, well, any credibility he might have had is gone). The rate of intestinal distress in autistic individuals is no greater than in the general population. Availability heuristic doesn't make something true.
However, if your child has intestinal issues and distress, it should be dealt with. Anyone arguing that people who believe in neurodiversity do not think medical issues should be treated is invoking the Full of Shit Law (new law).
I have three children on the spectrum. I do not believe autism is "rosy" although I believe my Rosie is. I believe that my children are beautiful children who have issues, multitudinous and many, and that it is my job to help them with those issues to minimize the impact the issues have on their quality of life.
There is a semantic distortion going on here if you believe that parents who support acceptance and appreciation (neurodiversity as operationalized above) means we don't try our damnedest to help our children achieve their potential, to eliminate self-injurious behaviors, and to work towards functional behaviors that will help our children succeed. Seriously, continuing that distortion is completely unacceptable and will lead me to believe you aren't interested in understanding different perspectives.
I will not allow such distortions of parents who choose to view autism as something other than the end of the world to go unresponded to. Show me one parent who supports neurodiversity who is not engaged in tireless effort to help their children do well.
I do not deny that autism ranges from profound impairment to what appears to those on the outside as relatively minimal differences from the "NT."
I want you to think, though, about the difference in self-esteem for those children with autism who are high functioning enough to hear, notice, and understand what's going on around them.
And there are plenty of those "recovered" kids according to many of the AoA parents who are still rushing around in a fevered desperation screaming about how the child had been stolen, taken, etc, and is damaged goods and consequently take them to every charlatan and quack out there, trying endless woo after woo to "recover" fully the children they lost. This isn't about the kid; it's about the parent.
Compare those kids and what they are subjected to to the higher functioning kids of parents who are not desperate, don't view their children as damaged goods, and recognize that improvement requires hard one-on-one daily cognitive behavioral intervention, working on building skill sets, getting them OT, PT, speech, etc, using medications when necessary, dietary alterations where allergies do exist, but doing it without that film of hysteria coating every action.
I have a child who isn't leaving home. He isn't. He'll be 20 this year and he will be with me by my side and in my home until I die. It's that or live with another family member or live in a group home. That's pretty much it. That's his future. I'm fortunate that we were able to eliminate all but the most minimal of self-injurious behaviors. I believe that is because we have created a safe environment for him where he feels loved, appreciated, and valued. He has a day center he attends where, with the exception of a couple of other disabled individuals who are occasionally bullying, he is safe and happy. I have dedicated my life to making his life as good a life as I could. That meant being with the school with him until his stroke and then homeschooling him for ten years and then finding a place where he can be happy, valued, and of service so that he has as much autonomy as he can.
I am not awash in desperation. I have not gone down every woo trail I can to frantically attempt a cure because there isn't one. It doesn't mean I haven't devoted thousands of hours to working with him, because I have. For well over a decade, I spent every waking moment with my children working with them because I know that no one else will have the level of commitment to their well-being as their father and I do. My daughters are higher functioning and their place is in the school system learning to navigate the larger world. I work within that system to give them the best outcome, but I never once abdicate my responsibility to them and for them and I continue to devote my effort and energy when they are home to helping them.
I have treated my son with respect and appreciation for who is while working with him to help him achieve his potential. He is happy. He is loved. He is valued. And he has never once thought otherwise. That's my job. And I'm going to do my damnedest to make sure that the rest of the world learns to see him and my daughters the same way: valued, respected, appreciated and accepted.