Autism- Hate and Judgement From a Surprising Source- Other Autism Parents

Autism awareness month is over.  And I really haven’t had much to say this year.  There is a reason for that.  The reason is that I am burnt out, and frankly disgusted with much of the autism community.  I have had nothing nice to say about autism awareness this year, so I chose to say nothing.  It’s funny to watch my progression through autism awareness month- the first year after Nate was diagnosed I took him to the Roar For Autism done by Kennedy Krieger and gathered as much information about traditional treatments as I could find.  The next year, John and I attended the TACA conference, and gathered as much information about cutting edge, non-traditional therapies as we could find.  And this year?  We went to Autism Awareness Day at Sesame Place.  And that’s about it in a nutshell.  My own thought processes do not fit into either Kennedy Krieger’s idea of autism therapies or TACA’s ideas of autism treatment.  I am blazing my own trail, like so many other autism parents.  

And once again why is this?  Because no one can really help us.  No one can really tell us what has caused our children’s autism, or how we can assist them most effectively.  That doesn’t stop people from trying, or judging.  I am sick of it.  I wrote about my disgust with the general population’s lack of autism awareness earlier in April, and received so many responses from other parents who felt just the same way.  And yet, here is the most shameful part.  In many circles, the people who are really attacking each other are autism parents who do not agree with one and other.  Or, on the other side, autistic adults who do not agree with parents “treating” their autistic children at all.  And you know what??  I call bullshit to each and every person who has criticized a fellow autism parent.  We all feel very strongly about our beliefs- of what is causing autism, whether it can be treated, whether it should be treated.  But unfortunately at this point in history our opinions are just that- beliefs.  There is not one definitive answer out there.

See, here’s the thing, I disagree with many people’s beliefs about autism.  I choose not to "go after" them or criticize them for their ideas- although today I will mention them to make my point.  For instance, those who say it is a solely genetic “condition”, one that makes an individuals’ brain different and not less, and that this should just be accepted.  I ask you this?  Why have the statistics progressed in this manner?

How much of a jump is that?  And do you REALLY think that this much of an increase is due to increased awareness?  I mean really?  Because I can promise you that if my boys had the same issues and behaviors and were born 15 years ago, I would have known to have them assessed and get them help.  I found out what aspergers was when I googled Jack's symptoms because I was worried.  So once again, I think that theory is a bunch of crap.  I will say it one more time- there is NO SUCH THING as a genetic epidemic.  Genes take hundreds and hundreds of years to change.  There is no way, if this is solely genetic that we should be seeing this degree of an increase.  Right?  So guess what??  To those who think this is genetic (only), a difference in a person, and that it does not warrant any treatment, but only therapies, I disagree with you, sorry but I do. 

And that is how I do feel, that both genes and environment are at play.  And I feel very strongly about this.  However, I do not shove these beliefs down anyone’s throats.  If you have children with autism sitting next to mine eating a big cheeseburger on a big gluteny bun and washing it down with a big glass of milk (packed with hormones) I don’t lean over and say you are a bad parent and what you are doing to your child is inexcusable.  I keep my mouth shut.  Because it is my BELIEF that nutrition has a huge impact on many kids with autism.  BELIEF.  And it is your belief clearly that it does not.  We both have so called studies we could reference, so let’s not waste our breath.  We don’t have a true answer yet.  Although, of course I think I’m right, ha.

The same goes with supplementation, and other treatments- I don’t tell you that ABA/speech/OT/special education are not enough because there are clearly other physiological problems that need to be addressed as well.  That new studies are coming out on these issues daily and that I feel very strongly that you might look back one day and regret not trying these other interventions.  Nope- I run around my house like a madwoman every day getting the boys’ supplements together while making them a GFCFSF breakfast, and intermittently saying, here swallow this, and here, drink this, and praying that I am helping the boys in the long run.   I don’t tell you “shame on you” for NOT doing this, so why oh why are there autism parents and autistic individuals out there shaming parents who are trying these methods, telling them that they should accept their children the way they are and that we are insulting them by “treating” them. 

I hear stories of kids who have shown tremendous progress with these interventions daily telling their moms (now that they can) “thanks for never giving up”.  This means something to me.

So I am pissed off.  Really mad that the autism community has become what it is.  I don’t just blame us parents, I blame the huge amount of conflicting information that we are all handed and asked to interpret.  We all have to draw our own conclusions because no one else has been able to figure it out.  And we all do this differently.  And that’s not our fault- we are all individuals.  And this is a scary damned thing to have to face, every single day, when no one can really tell you what the right thing is.  What I can blame on us parents is the JUDGEMENT.  We all know what it feels like to be judged to be “bad parents” when our kids misbehave, or have meltdowns, hit themselves, cover their ears and yell, or try to run away from us.  And we know these are behaviors associated with autism and NOT our parenting skills.  Can we maybe agree to disagree about autism causes and treatments for now, and band together and build each other up rather than tearing each other down?  Maybe stop calling autism treatments that are not, as you say “proven”, quackery and persecuting  parents who are truly trying to help their children?  It’s my understanding that in order for a treatment to be ruled out, or considered quackery, one needs to know the cause of the disorder first.  Maybe that’s just me.  We are all doing our best, and we all deserve respect for this.  How can we expect others to become “autism aware”, to have respect for what we all go through, when we can’t even do that for each other?    

Back In The Saddle

Where have I been?  This is the longest, by far, that I have gone without blogging since I started nearly two years ago.  I have started many entries in my head and just ended up with nahhhh…..

I’ve been really tired, my migraines have been rough.  The kiddos’ schedules are out of control much of the time and keeping up with them is taking all of my energy.  After Nate’s IEP meeting I was kind of in a funk.  Thrilled for all of the positive changes, but well aware that we have stepped things up with him many times with little to no results.  I don’t know how it happened, but somewhere along the way, I have become the cynic when it comes to Nate.  It’s not so much that I don’t believe he will improve; it’s more that I am too scared to hope.  Every single time he does something new, I allow myself to get excited and then kind of pull back- will this last?  Will he ever do it again?  Will he lose this skill in two weeks?  It’s scary, there’s just not another word to describe it.

He is still clapping and he is still kissing me- and daddy, and Grammy!!  He is stomping his feet, tapping a table, interchanging those with clapping and getting the correct one something like 8 out of 10 times.  He is back to enunciating toast, juice, he said window last weekend (not again yet).  He is ornery as all get out, and this is definitely a positive. 

All of the therapists are coming around to that way of thinking now that they are seeing some progress- that his irritability is more of an “awakening” than a behavioral problem.  We have implemented very strict ways of dealing with it- if he tries to hit out of frustration we grab his hand, put it to his side and say “no” firmly (I know, rocket science).  The funny part is that he has totally gotten that- and now he will reach out like he is going to hit and after one tap or even before, he segues right into clapping.  Like, “oh wait, this is what I really meant to do”.  It works for me, when he reminds himself not to hit, I do feel like clapping for him!

We had our one month follow up at NIH last Friday- he has been on Aricept for 4 weeks now.  He impressed the pants off of the research coordinator- he said “cook” for cookie, and I said “you want cookie” (standard procedure to repeat a million times), I pulled a cookie out and he said “no, juice”.  He has never done this before.  Normally he would scream and hit out at the cookie.  This is a huge improvement in communication, not to mention that he did it in the presence of strangers, when he usually holds back in unfamiliar situations. He said “fish” when we were looking at the aquarium in the waiting room; he clapped for them and gave me kisses.  They are in love with him- they have left no doubt in my mindJ.  And I LOVE NIH.  They are just fantastic there.

As I said earlier, we also had his IEP two weeks ago and implemented a bunch of changes.  So now we are back to- why is he improving?  I actually have a tendency to believe that the medication is responsible for the changes- as I said earlier, we have been intervening like maniacs since Nate was younger than two and his progress has been slow, as in snail-like.  Yesterday I had a parent- teacher conference and his teacher said that in the last two weeks, she would have to change that description to “good progress”.  AKA, he is having a steep upward trajectory at the moment.  I just don’t think it’s a coincidence.  He is using PECS (physical ones, not on the computer) to make choices in the classroom, both play and food based.  He is participating in the routines.  Apparently in the past he would hide in his cubby and try to break into his lunch bag.  Both hilarious and sad at the same time.  His sleep has evened out for the most part; he is sleeping in his own bed again….

I don’t want to talk about it too much though.  I am afraid.  Wimpy mommy.  I want this to continue so badly but I am so stinking afraid that in some ways I can’t enjoy what’s happening right in front of my eyes.  Deep breaths…..we have to appreciate the here and now right?