Friday, 2 May 2014

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?    


  1. I know it is not my business so I am sorry if I'm wrong with it. But couldn't your parents give you two, you and John, a possibility to have month's vacation once a year away from your every day chores and thoughts and care for your children? They or other relatives of any of you two, maybe could live with the children for a month in your home so you could have a rest. Because from post to post, you Jenny look very tired. If I was able to see this, they could too...
    If I am wrong, just delete it.

  2. Good post. I agree with you...but I see that it goes both ways. I have been around the block for a while. I see how the Warrior moms shame the other moms who don't do biomed...they call them lazy and that they have given up on their child. Just check out the facebook pages of these groups and these "leaders" - it's a daily thing. At the same time, I am all for acceptance, but dammit, I would never choose this for my child. I advocate and push and try all sorts of different methods and therapies. I am very engaged on the local level and in many facets. Just because we no longer pursue biomed, doesn't mean I am not progressive or I don't care or I just accept my kid as he is! This community is so polarized, it's maddening. We need to stop criticizing one another. thanks for the read!!

  3. There are hundreds of “therapies” for autism, and for each one you will find someone swearing that it is effective. Truth is there is a huge parental placebo effect and the more you put in, the more will "see" some changes. Best is to talk to parents of teenagers with classic autism, they will have tried GFCF diets, hyperbaric oxygen, B12 shots, supplements, homeopathy, ABA, music therapy etc. Save yourself a lot of time, upset and dollars and see what they have to say.
    Parents of kids with ASD can get so involved in autism they lose touch will reality. Best is to hang out with regular parents and their regular kids. There are some very nice NT kids who are just great with kids with special needs. Putting a bunch of kids with special needs together does not exactly help them with their behaviors; they will just learn each other’s “odd” behaviors.
    As for the “therapists” and “doctors”, they have much in common with the ASD parents, they cannot accept any opinion other than their own. In their opinion, they are right and everyone else is wrong.
    Enjoy your kids while they are young, and forget about autism.

  4. It seems to be there is more shaming and pressure on the moms who don't honor and celebrate autism with cheerfulness and who are too burnt out to try every new diet, therapy, supplement etc.. My child has been in mental hospital 17 times, he was kicked out of his special ed program (put on homebound) and that was with a lawyer and advocate present. He attacked the kids in wheelchairs. I did a color coded level system behavior mod program for years-- every activity/toy was was color coded, I did the picture schedules, the sticker charts, speech and OT ttherapy, paid to have an ABA specialist come to our house, I fed him his quinoa and spinach, organic meats and gluten free popcorn-- this did not change his out of control behaviors. I admit I did not control what he ate at school or at grandma's house- I tried but his teacher quit in the middle of year-- he kicked her in the stomach, he also hit a woam 7 1/2 mo pregnant w bookbag, bit another lady in chest, attacked toddler next door .w/o provocation. , etc..the list goes on and on. regardless of what he eats or not- I do feel torn and mommy guilt-- I got the psychiatric facility to release him in my care (he is 14)- He was there for 13 months -- I live isolated alone in a little house on top of mountain; I bought this litttle house just for him. this was the only way I could take him back-- if I found an affordable house in the middle of nowhere-- no neighbors to attack. And he can scream on the front deck about imaginary spiders at the crack of dawn wo concerned neighbors getting involved. I walk on constant eggshells. He is on shortened school day. I pick him up before lunch and then we are homebound on top the mountain together- He tried to crash my car while I was driving 60 mph the other week. I'm sorry but I have decided to let my child eat icecream. I have recently reattempted the GFCF diet , but he would not eat the GFCF breakfast lovingly prepared, and then got Trix cereal at school. The school has offered to cooperate if I do want to do th diet but I am afraid of what he might do if denied his choice. Living/Teaching a child with ASD is like terrorism. You walk on eggshells and pick your battles to avoid explosions and people getting hurt. I can't try or give up anymore. If I don't brush his teeth, they will rot. He still gets diaper rash. He is out of touch w reality though he is quite verbal. He talks to me like garbage sometimes and I just have to take it. I asked him to carry some cans of ginger ale in the house and to spite me he busted them on the ground and came in laughing with the can spraying all over the hall. Even if I controlled every morsel he ate, it would still be like this. I hear an undertone of judgment despite your restraint to not say anything about the big gluteny bun. I feel numb but that is the only way to cope with this. I can't expend any more hope or emotion on this. This is not some unique trait to celebrate and honor like some indigenous peoples film festival. I'm too deflated to be cheerful and celebrate.

  5. I blame the insurance companies and medical community for not getting their sh** together with changing systems fast enough for a chance at rehabilitation in any form. Pure apathy in my opinion and a real true violation of medical ethics in general. That is why the community has reached for any available resource that is not related to losing hope in their own children. Rehabilitation has been in process for decades in hospitals for brain injuries why is developmental delay not viewed in the same light? It is surprising how much people are the same from a standpoint of biology. I am highly disappointed in the medical community and its lack of leadership.