I participate on only one "parenting" board and only because it is for the parents in my own hometown.

The reason I will not participate on parenting boards as a rule is because I know I do not have the social skills required to successfully navigate those boards. Most of them have the opinion that "support" for the parents is more important than advocacy or support for autistic people. As such they allow statements that are offensive to autistic people with the justification that it is okay to error on the side of this emotional support because the parents need emotional "support" for the challenges they are going through much more.

Of course it is the case that my communication style on the one parenting board I do visit is often mistaken for being rude, arrogant, not very nice, narcissistic or whatever.... (Net is that it makes people mad). There are a few main threads that seem to take place during these misunderstandings and I thought it prudent to document these so I have this pointer as an education tool for next time. The main themes are as follows....

1. Autistic person is not trying hard enough
2. Autistic person has no right to be offended over NT parent need to be supported
3. "I accept autistic people but..."

"Karla is not not trying hard enough..."

This statement is always followed by some assumption or statement that I could just "get it" somehow. I actually received this comment in a thread just last evening...

"I want for all of my children (NT or not) as well as myself to both be empowered self-advocates and to take responsibility without self-judgment for their impact on others. I do not see Karla doing that here. And it has a cost to this community and many individuals. Autistic people are capable of that , just as NTs are (it is more stressful and difficult but then again so is being a parent of a child with special needs).....

I put in highlight the part where I am assumed to be quite capable if I only try harder. I see this same message over and over my whole life. Some well meaning (or not) NT people suggest to me to use, tools such as post-its to help me be"nicer" while others attempt to teach me one phrase and dissect its meaning. They think that my memorizing that one phrase somehow plays into the infinite possible contexts where that phrase may be used. Sometimes this advice is offered in an attempt to "help" (which I appreciate and thank them for even if I think it silly). Most of the time it is more about resistance to them doing the work to accommodate my needs. All of it is based on an assumption that I should just be able to figure this stuff out and improve upon my skills if only I would try harder. I wonder do they forget that I am nearly 50 years old and have been trying to do this thing my whole life. The assumption from their perspective is that I still have not tried hard enough. (AKA: It is behavior based versus Autism = Social Communication Disorder)


"Karla has no right to be offended over my need to be supported..."

Usually an "ASD offensive" statement comes from the most emotional times of parenting blogs and/or threads. All people need to vent. As a single parent myself, I can totally comprehend the day-to-day challenges of raising kids. And for the most part, that venting is completely okay with me even when it is about their autistic kid. I see the parents as the expert on their child and their role is the day-to-day operations of their child/story. I do not presume that I know more than a parent about their child nor judge them (provided they use good common sense about parenting overall)

I really only ever speak up and object when I see one of the following happening in a thread...

1. Statements or sediment moves from their own personal story to Autism as a whole.
For example: "My joey experiences really crappy days sometimes." Vs. "Autism sucks"
2 Story or post that perpetuate negative stereotypes or are designed to fuel the "fear/cure" fire.
For example: Imagine a story where a male author is singing the praises of his granddaughter's good driving skills (you know 'cause girls cannot naturally drive well... ) Apply this concept to Lacking Empathy, Lacking IQ, being burdens to society in general, etc...
3. Blaming Autism or your child for your personal decisions or for normal "bad" events.
For example: Autism caused my divorce.


I care about these kinds of statements deeply because my role is to look out for Autistic people as a whole. Parents do the day to day stuff (basic survival for one autistic person) which I support the best I know how by writing information for them to consume. My work helps/supports that goal by helping the parents to make better choices for their autistic kids. But underneath all of that I work towards making sure that when autistic children grow up that people respect Autism and Autistic people as human beings. I make sure they have the best shot at getting all the same civil rights as any other human being. You see folks... that is not happening today for us and all of those kids will certainly experience this when they are adults too unless we all act together to stop the negativity surrounding autism today. In the same way that I support parents in their 1:1 role, my ask is for parents to support me in my role for the greater betterment of autistic people. When you are posting things that impact my ability to affect this bigger picture, is when I speak up.

Many parents are too distressed, scared, confused and tired to see that beyond their 8 year old Autistic child is a world that is significantly bigger and a lot harder than the occasional IEP battles, the dirty diapers, the sleepless nights they deal with on the day to day. But that doesn't stop the fact that kids grow up and require the world to treat them as humans. I tell parents regularly to change their google searches from "Autism" to "Disability Rights" because THAT is the root cause of the problems that exist with Autism today. Many parents eventually move into this bigger picture thinking but some do not. I can share that once they are able to understand and support this bigger cause, there is much more clarity and all report that they feel liberated/relaxed compared to before. Unfortunately in order to do that, parents have to come up and out of the emotional (fear, anger, denial, fix) cycles. This doesn't happen overnight and some it takes longer... And that is okay/normal. But it also means always there will be misunderstandings. So there will also be me in the mix helping people to see how these statements hurt the bigger picture and asking them to support me in this bigger effort.

"I ACCEPT my autistic child but...."

When a person adds the word "but" to this phrase it negates the first part of the phrase. I have NEVER seen a parent use "but" in this phrase where they did not make a list of things they wanted to change not only about their child but also about their own life or their struggles. If you accept your autistic child, there is no "but" about it. It is a hard concept and people too often confuse the "concede" part of the acceptance life cycle as full acceptance. Concede and Accept are very different words and stages of emotion. Acceptance is a simple word in concept but so hard in application. Imagine if your partner came into the room, wrapped his arms around you and said, "I love you honey but.... " and then he proceeded to list a bunch of things that are fine with you but that inconvenience him. Like your hair is the wrong color, or you are too fat, or you don't like the same shows as he... How exactly is that love or acceptance?


Blog responsibly folks...

I actually rarely speak out about the many articles that I chance upon that I think would probably be hurtful to me if my own parents wrote that story because they do not technically break any of my 3 biggies above or I just plain do not have time (there are so many). That said,I really think that we all would be wise to heed the stories being told by my colleague and repeated online. She is a clinical psychologist and sees a number of autistic teens every day. She tells me all the time that autistic teens ask her why people desire to cure them or to fix them. They have self esteem issues as it is and then they read messages from their own parents that are the opposite of acceptance. Thing is most often autistic kids grow up to read and they can very easily look up and find the things you write today even decades later and even in "private" places. Once you push the publish button, you words go out on the internet there really is no taking them back. You can delete the post from your site but it may be mirrored or copy/pasted on another site. The words can potentially be out the web for a lifetime. You cannot pull them back. Delete does not always delete and private board/forums are hardly secure. Imagine your 20 year old autistic son or daughter reading your blog posts or the posts you write today on a forum or board. Even severely affected autistic people often grow up to be able to read/comprehend so imagine harder if you cannot see it right now... Read your words literally and with the bigger picture context that they will have when they are adults. Will your words give them self esteem or take it from them?


Neurodiveristy is here in Portland

Recently a few of the parents on the parenting board where I participate decided that trying to accommodate my disability was too hard. They said I was not trying hard enough, they said they did not feel "supported" on the board. They claimed they accepted Autism in their own kids (with a long list of "buts") and that was good enough. Their suggestion was that I leave and/or be made to act more NT in my social communication. (my choice of course). They did not see their actions as unjust, discrimination or anything other than right for the community despite my repeated attempts to get them to understand that I needed accommodations. From all I know the uproar was because I said that Understanding how Autism is a Social Communication Disorder is Rocket Science. Apparently that is an invalid use of the word Rocket Science.

The moderators wrote the following statement in response...

"As moderators we are uncomfortable discriminating against individuals with autism. Our own children will be adults soon, and we hope that people will do them the courtesy of facilitating their communication when they are having difficulties."

It may be Rocket Science but these local Moms get it or are (at least) trying. My commitment to neurodiversity and a change in Autism discourse lies first with my local community. I am pleased to see the tides of change in the Portland Oregon parent community towards acceptance and Neurodiveristy. I like to think that some of this is due to my work but I know the the real credit goes to all of those parents, professionals and caregivers who work so hard to try to understand and support us. When I see acceptance and support like this in the community it gives me hope that one day the world will give autistic people (and all disabled people) a fair chance to be the best people they can be. Hope that discrimination and hate go away. Hope that the world can accept that Autism is not a tragedy, nor something to be feared, fixed or cured. Hope that everyone learns that Autism is something we all must learn to accept and support. Hope that together we can make all of this happen in my lifetime.