Nothing is particularly up. I think I am having one of those weeks where many things are causing me to think about Rachel’s autism and all the things we have done, seen, tried, been through and what will happen next. I also have seen, for the first time ever in the popular media, a book published on autism that was NOT the “my child is recovered from autism” story – which doesn’t mean there haven’t been others, but I haven’t seen them. I still need to grab “Boy Alone“, but I am looking forward to it from what I have read so far, because these voices need to be heard also. My voice needs to be heard, Ashley’s voice needs to be heard and Rachel’s voice needs to be heard too. Hopefully Karl Taro Greenfeld’s work will help there.
When I see someone out on the talk show circuit: “For $29.95 buy my book, or better yet all five, and I will show you how to spend thousands of dollars on treatments that have — at best– anecdotal support so that your child will be recovered too. That is if they are in the 3-20 percent that can recover in the first place. ” I find it annoying. Yes, yes I know I shouldn’t. Those wonderful talk-show circuit celebrities in the spot light are just trying to give a voice to all those moms and dads out there struggling to recover their children from autism and they have really special insight into this because the did the right stuff. I find it annoying because they don’t talk enough about the 80% of children that don’t get “recovered” — in fact they don’t talk about them at all, other than in passing, as the standard disclaimer that one or another treatment won’t work for everyone. They sell hope, they sell a lot of hope and I will give you that hope is needed, but hope doesn’t compensate for the 80% reality, especially not for those on the severe and profound ends of the autism spectrum. If your child is on the severe end of the spectrum, yes, you need hope, but you need reality too. You need to know that as your child ages things will change – sometimes changes might be good and others will be challenging. You will need support, you will need to have a plan for what to do as your child enters adulthood. You don’t need to be physically exhausting and financially bankrupting yourself trying every single cure d’jour out there and you do not need to feel guilty about not being super mom (or dad).
So if that is what is up, why do I hate warrior moms? Short answer is I don’t. I don’t hate warrior moms at all, in fact it has at times been a word I would use to describe myself. I really have nothing against moms (or dads for that matter) who want to describe themselves as warrior parents – as long as their spears aren’t pointed at me. And, amazingly, some parents of autistic children do just that. Crazy I know, but please stick with me for a moment.
I think for some parents of younger autistic children parents of autistic children who are older, teens or adults, can be very frightening. Because our children are living proof that not everyone gets recovered/cured. Occasionally this manifests itself in the assumption that there must be something we did or didn’t do. Did we not try “X” diet? Did we start early intervention soon enough? Did we do enough hours a week? What about heavy metals? I have seen it, the mom with the younger autistic child, she is sure – absolutely certain – that there must have been something we didn’t do. And she is right, there are a lot of things we didn’t do. We never tried aversion therapy, we only gave Secretain two rounds, we tried wheat/glutton free for a couple hellish months, we never pulled out the carpet, or re-paneled the walls. No one can do it all and there is a fine line between trying “everything” and driving yourself and your child beyond with is good.
But Rachel wasn’t one of those “normally” developing children that suddenly became autistic. She was different right from the start. At three weeks I remember my mother noting the intensity with which she would stare at her jumpsuits striped cuff. There was always something a little off – she would get so upset with the least variation in her routine. We thought she might even be deaf at one point. Further she has no less than three cousins that are on the spectrum on her father’s side. So yeah, I think it is probably genetic too. But even with the knowledge that Rachel has probably always been autistic, and even knowing that she was never in the high probability to recover group, it is difficult to keep an even countenance when the questions (all well meaning of course) come from someone who has heard the latest celebrity explain how to cure autism. THAT is what I mean when I equate the current “Warrior Mom” mentality with the “Refrigerator Mom” mentality of the 50s and 60s. It isn’t that I don’t think warrior moms are wonderful people advocating very hard for their children. But the reality is that there is a cultural assumption perpetuated by the media that if moms and dads do enough or try enough then they too can cure autism. This is not exactly a positive thing for parents of children who are teens and adults and still firmly on the spectrum. It is almost mind boggling that parents of autistic children want to jump on that band wagon, but some are more than happy to do it.
So if you are a warrior mom and you think I have totally lost it, don’t understand, am really mean to Ms McCarthy (because I mention her name once in passing as someone who claims to have “recovered” her child from autism) or whatever that is FINE. I really and honestly hope that you find that thing or a combination of things that reduces your child’s autistic symptoms and I totally applaud your efforts to do so… BUT (you knew that was coming right?) Do not make the same mistake I did. You may find that your child at 14 is every bit as autistic as they were at 4 and it will be ok. It won’t be normal, but it will be ok. You don’t have to beat yourself up, or let anyone else beat you up over it either. And once you get to that point you will likely find it every bit as annoying as I do to have to listen to the person at the grocery store, or your aunt, or the new neighbor ask the same questions about Diet X and Music therapy and you will smile and sigh and go on, and if you are like me you will rant to your blog because, well, sometimes you just need to rant. Because you need to say it. I am Darcee, my daughter Rachel is 15 year old and is severely autistic. She will always be autistic. I love her and she is a happy girl most the time. Her life is not normal, but it is hers and it is good and autism is just a part of that. I didn’t fail her, though I sometimes have felt like I have, but she is and will always be autistic and my daughter and someone who is loved.
Simply Catholic 
I certainly wont pretend to know what you are going through … but know that my prayers are with you and Rachel.
I accidentally ran across your post from somewhere else, but I was very excited to read it. It sounds just like when I was a kid, and my sister was born autistic. Now I’m 32 and she’s 25, and she’s so close to normal, it hurts. She did not talk til she was six, and like you, we thought she might be deaf, or maybe she had muscular dystrophy. But that’s what it turned out to be, and she was, indeed, different from the beginning.
As an adult, we’re finding that she doesn’t get that she is the reason why she can’t stay employed. Her demeanor is anti-social, but she doesn’t see it. She’s a pretty intelligent, nice person, but she had friends as a child because when they are children, people are more willing to give them a pass. As adults, it’s a whole new world. I am going to have to read that book, too. I read a related article in Newsweek or Time, and it reminded me that I will indeed be my sister’s keeper when my parents pass away. It’s in the will and everything. My other sister (younger than both of us), all but hates her, so can’t be trusted to care for her. Sigh. For right now, I’m enjoying every second of my life before my parents’ health begins to fail and my sister becomes my child. We have going on five kids, so it will be a challenge, but trusting in God helps, and so does that occasional reality check you speak of.
Hugs from someone who knows something of what you mean.
God bless!
I think I have written the exact same article in my head about fifty times! Nice to see you put it in print. I find that when I take the time to just love my son Nicholas rather than “make it a learning experience” which is perpetuated by books and media I drive myself nuts. While we need to use the techniques we also need to just be our kids moms. The Holy Spirit helps us communicate better with our kids than anything else and He gives us and them the voice and inspiration. My son molds me and I mold him—-I also enjoyed your advice on Holy Communion prep. He will make it in the Spring and he is begging to receive Holy Communion now. Carry on with the good work you are doing and you are in my prayers.
Laura
I think part of the problem is that some of the kids who’ve magically ‘recovered’ from Autism weren’t really autistic in the FIRST place.
Note to celebrities — if taking dairy or gluten out of the diet magically cures a kid, they had a dairy or gluten problem, not autism.
If your child was normal until they were a year old, you put him in daycare and he shut down, and then when you took him out again he turned normal, he wasn’t autistic.
It’s like claiming that you’ve cured your child of anemia by letting her sleep more— if all she needed was more sleep, she wasn’t anemic to begin with….
But since there’s no bloodtest for autism, people call all sorts of things ‘autism’ when they’re really not…..
THANK YOU for this!! I really feel like I am going to lose my mind with all of this. As if we don’t have enough stress, now we are expected to recover our own children (even when the most brilliant minds in science don’t understand it)! The “warrior” movement really puts a bad taste in my mouth. Oh-I was on that track for a year or two, until I had the “awakening”. Thank goodness I never did anything dangerous or extreme. I felt very much like I was being recruited into some cult. It’s all very strange. They have no tolerance for questioning or a different opinion. If you do, you are attacked, called horrible names, and ridiculed. While I feel there is some merit to a few issues (vaccines concern me and I do believe GFCF will help those with allergies or GI issues), as a whole, I think they do a disservice to the community. The “outside” correlates “Warrior Mom” with “Crazy Mom”. And the sad part is, I completely understand why. I am happy to support others who chose this route, but I don’t want to be scolded for not pursuing it or be told I am a neglectful mother.