I write this post to educate the many wonderful and hardworking caregivers of ASD people about the dangers of some of the language they use, and why it may hurt the very people they are trying to help. I see these words time and again in blogs and videos and articles. Some of this is simple disability rights stuff, and some of it does not represent my own viewpoint necessarily, but I have heard it from many ASD groups and the individuals in those groups. I am hoping to break down the language for you so that you understand why your words matter and why they hurt. I hope this gives you guidance as well as new words and perspectives that you can use to continue to provide support to the ASD person you love.

I read a post recently where a mother of an ASD child was wondering why anyone would not want a “cure” for ASD. I hope this helps her and the countless others who wonder this to see another side.

These words mean that something is wrong.
The word “cure” causes many people with disabilities to be hurt—not just in the ASD community but also many others who are labeled with a disability. Some people with disabilities do not see themselves as disordered. Nor do they see themselves as “lesser.” A valiant charge for a global “cure” of ASD would presume that you (the person using this word) feel that ASD is a disorder and that the person you want “cured” is lesser because of it.

Many ASD people are quite happy just the way they are. There is even a camp in the ASD world who feel that without ASD, there would be no great inventions or art.

I watched this video once on YouTube that was marvelously done by a very caring father. It was set to a song with words saying that he was going to “fix” his little girl. Now at 48 years of age, I can abstract what that means and even understand that this father meant well, BUT my heart broke for the day that his young daughter comprehended that word and its literal translation in the context of that video. I know that had my father ever used that word around me, it would have destroyed me and I would not be the person I am today.

These words cheapen the fact that true ASD is a PDD.
Because ASD is pervasive (meaning you cannot parse the good from the bad), many presume that to “cure” would mean to take away who they are as a person. I personally would love to cure my symptoms, but I would not take a cure that did not parse the symptoms from the person (which will never happen in my lifetime). This is largely because I hate change (LOL) but also because I do want to keep the good things that I have that may be part of this disorder.

ASD is pervasive. (Take a moment to think about that word.) It is a WHOLE BODY disorder. It is something that starts in the brain makeup and affects every single thing about the person who has it. Most ASD people suffer high anxiety due to the pervasiveness of the disorder. If you put a healthy NT and a healthy ASD person into almost any situation, the ASD person will have higher stress. This is because of the extra work they must do for any task they set about doing.

Many people might say that I am recovered because I operate at such a high level. They see how successful I am and see that I do not have violent meltdowns, so it must be the case that I am fine, right?

That thinking completely disrespects and cheapens the work I do every single day that is over and above anything an NT may have to do. When I first walk into a room, I have to build that room up from little fragments of data. This takes HUGE cognitive energies. An NT may see a table and chairs as soon as they walk in… I may see patterns like digital camouflage. I must spend time in the first 15 minutes acclimating to the room and building the objects. Now take this effort and multiply that by every instance of every time we walk into a new place. It isn’t that I am incapable of doing these great things, but the energy I must spend to do them due to my disability is something that you must remain aware of if you are to be my caretaker.

Oh, and let’s talk language. Does your cure, fix or recovery make me see the world in words instead of pictures or patterns? No, it does not. I still have to make full translations real-time in conversations to words (my second language). Think of it like you traveling to a country with a different language. Think how hard that is even after you get somewhat conversant in that language. Remember how there is great anxiety release when you can again speak in your native or natural tongue.

Here is a comparison of an NT brain and an autistic brain processing the same thing. Notice that the autistic brain has to use more cognitive energies or processes in each category. This is what sets us apart.



MeltdownModel1.jpg


Some days will be good days and some will be bad. On the good days, I may be functioning so well that no doctor would be able to tell that anything is wrong. But as soon as my nutrients go off, or my sleep or any number of things go wrong, my symptoms worsen. I am not ever cured, nor fixed, nor recovered from the symptoms that cause me more anxiety than an NT, and I must always be diligent and mindful of this. My brain setup will predispose me to these worsened symptoms at seemingly random times. That is what ASD is.

It is absolutely dangerous to the ASD person (IMHO) when their caretakers think that they are cured, or recovered, or fixed. What parents and caregivers today do not yet largely know (though many are starting to experience) is that a large percentage (much greater than 50% from all I see) of ASD adult individuals actually hit a wall. We call it “autistic burnout” amongst ourselves. It largely happens because we are never given permission to admit that we are ASD and to act ASD. We are never given permission to give ourselves the tools and rests that we need. We are always being asked to compare ourselves to our NT peers. I personally have suffered from clinically diagnosed exhaustion more times than anyone should in a lifetime. Before my DX, I could not understand this. Since my DX, I have not run into this as I am resetting my goals to match my abilities instead of the abilities of the NTs around me.

Researching dollars for the cure...
Acceptance does not mean that we do "nothing" to help improve ourselves or the quality of our lives. I supported ANYTHING that science can do that will help us to have a better quality of life. It would be great if the people doing the research/science actually asked us what things would help. As it turns out, the cure research actually ends up finding some useful information to that end but that useful information can only be found by laboriously digging through the cure talk so it never reaches the people who matter. Also most of the research is based on theories, myths and sterotypes generated by historical NT viewpoint of what Autism really is. More importantly the whole "cure" mentality really is daming to all of us in the bigger picture. It diverts most of the dollars raised by Autism fundraisers and blocks the whole process of acceptance for many. Sure, the cure research uncovers good things too but the better question is how much better to spend those monies towards acceptance and towards tangible things we can all do today? Realistically we are many lifetimes away (if ever) from parsing the "autism" from the person and it is long beyond time that we stop the whole "hypothetical person" thinking in the industry.

I fully support research for services and devices that will help us to reduce the autistic symptoms that cause me to paintpoints such as sensory processing issues and anxiety. This assures the best quality of life that we can have as that is where I must focus all my energies and my suggestion to caregivers and professionals to do the same.


But what words should we use when our child is better based on XYZ therapy?
Here is how you say it in respectful (to them) language. Bonus here is that it is also more technically correct. Your child’s symptoms are reduced from XYZ therapies. The fact is that he is still autistic and still has more anxiety and works harder to process the world than he would if he were not autistic. He also must be diligently watched and he must learn to watch out for himself and advocate for himself all through life, even if he seems to have no more symptoms… because (provided he was diagnosed correctly) he is still and always will be autistic.

I am all for any therapy that works to reduce symptoms. I hate to see people paying more money for “autistic” gadgets and pills that are the same as non-autistic pills, but that is the topic of another post. Whatever works for you is great, but please respect the ASD person in your care/friendship and do not talk about their ASD as the “bad” thing. It is not the autism but the symptoms that cause us and those around us troubles. ASD gives us some good, too, but the whole of it is who we are as people. We cannot parse the person from the autism. We can talk all we want about autism not defining us, but it also never leaves us. Today I am autistic. Yesterday I was autistic and tomorrow I will still be autistic. It is what it is. And it is good.




Acceptance versus cure:
http://www.care2.com/causes/you-cant-bleach-autism-out-of-a-child.html
http://www.thinkinclusive.us/why-autism-speaks-hurts-us/
http://mamabegood.blogspot.com/2012/05/autism-system-not-good-enough.html

Causes:
http://yeahgoodtimes.blogspot.com/2012/05/new-study-shows-autism-linked-to-moms.html (breathing...)