How Do You Feel About Other Autism Parents?
Thursday July 16, 2009
Yesterday, I wrote a blog about stressors for parents of kids with autism. In my list, I included this bullet point:
Every support group for parents of kids with autism includes at least a few vigilantes who are determined to indoctrinate all the other parents in their point of view on autism. Just coping with their onslaughts is tough enough -- even tougher is resisting their sales pitches and guilt trips.Several commenters feel that what I said was inappropriate -- and that I should not say negative things about other autism parents. One commenter, Alison, says (in part):
Having other parents of ASD kids tell everyone what was helpful to them, and what worked for their child, is a gift, not a guilt trip towards anxiety. It’s a gift of hope and accompanied by a tool that may possibly help someone else. Even if only one other child is helped, that gift has become pricelessDespite these responses, I stand by my statement. I've met, read and heard far too many autism parents who are so passionate about their beliefs that they're ready and willing to lecture a stranger in a grocery store; insist upon the undoubted truth of "facts" heard on TV talk shows; roll their eyes at differences of opinion; or otherwise make life unpleasant for anyone who disagrees with them.
This is by no means an indictment of "autism parents" overall. I've had fabulous experiences in support groups, and met wonderful parents in all kinds of settings. But the fact remains that, for me, other autism parents are often among the top stressors in my daily life.
What's your opinion? Do you feel a kinship with all other autism parents, and find that their opinions are gifts? Or do you find it stressful to be the focus of impassioned lectures on the benefits of therapist A, treatment B, and program C?
Vote in the poll, or share your opinion here!
Comments
I disagree, it can be a guilt trip. That’s how some autism parents make you feel and they are pushy about it. An axample would be how child A did so well on this med, but child B did not. Or child A having this wonderful teacher, but child B did not do well with that same teacher. I also have met many wonderful autism parents who without telling me what they did and how I should do things, accept what I am doing and I accept what they’re doing and it was way less stressful. You just can not base every ones experiences as being what you yourself will experience.
I think the parents and other adult autistics that irritate me the most are the ones who say if we dont embrace autism then we dont love and accept our kids I WORSHIP THE GROUND BOTH MY SONS WALK ON but if i had so called embraced Autism my oldest son would still be unable to talk and would still be in special ED
Hmm the poll was a tough call. I find some other parents to understand and that in and of itself is like finally landing in the airport closest to home. there are other times wher potehr parents are at different points in theior acceptance, I have also found that the things we have in common can over shadow huge personality differences. I focus on getting my son what he needs, I simply do not have the energy for the cause /cure theory .. schools of thought. years ago I fell for many “cures” As parents of children with autism we also battle hope deferred. There are awesome victorious days and we hold onto those days. Socially we are loners. It is tough to stay at home on the big family get togethers when we know that they( families, in laws) do not really understand. I have had to distance myslef from other children’s parents , I cannot blow up on someone for a lack of understanding. Reading about nyet another “study” it is like being able to judge where someone is or how long ago their child’s dx was.. by what they say. the process acceptance has many well worn mile stones. I would never come down on anyone going through it. I still am cranky when I hear about how much $ has been spent on yet another study. If there were guild lines instead of graduates looking for a topic, that might curtail the problem. MAny reseaarchers are looking to be helpful, they do not all have familia knowledge of what autism can do. SOme findings I have about fallen out of my chair laughing about where you want to holler, wow, you really took awhile thingking that one up, didn’t you.. but sadly most of them are coming from a stance of wht they know in books, there are fruitful studies, msot likely they will be produced form researchers that are very very well versed in all things ASD. BUrnout and red tape are huge. E did not realize the magnitude at the time of our son’s diagnosis, our pediatrician at the time waited till I walked out of the room and firmly told my husband to start his own business because they therapy regimes and appointments would be tough on everyone, esepcially the heat from employers,and schedules. throw in HR and FMLA nightmares it cna be very very hard.. the joys and rewrds? They are monumental, big, they are shouted from the roof tops.
codysmom I think we may go back? I want to say we were in a support group or two together.
My best to everyone raising young people on the spectrum.
We are all passionate about our kids and can become annoying to other people even if we only have neurotypical kids. Other parents stress me out in general, it’s not just the autism parents. Every time I meet new people through my kid there’s that initial stage where I don’t know the other people’s ideological views about anything, so i’ts always a careful, diplomatic process until you start feeling more at ease and able to really express your views. With fellow autism parents, I wait for them to say if they’re biomed or not, before I give them my honest opinions.
I have to add that i think people in general stress me out when it comes to my kids adults are curler to deal with then kids . They stair or comment on if that were there kid or they flat call your kid a brat to your face and then throw in the Autism parents who say OH DO THIS DIET OR YOUR A BAD PARENT give your kid this suplement put your kid on this med . It is exhausting enough to deal with 2 kids with LDs . I wont lie i do hope they figure out a cause (though i think there is more then one cause) and better help I dont really think it can be cured
i dont belong to most of them anymore it got to be too 8th grade for me hope life is well for you
Coffee mom We do know each other from a few other suport groups
Some ‘autism parents’ also have autism. Sometimes autism itself, or advocating for autism, is an autistic or aspie person’s area of special interest or ‘obsession.’ Be a little more understanding when you meet the parent of an autistic child who talks to you about their strong interest in advocating for autism – in whichever direction their belief goes. “Curing” autism or “Celebrating” it – either way, they care a whole lot about the topic. And why shouldn’t they care – even if they themselves are not on the spectrum and simply have a close loved one who is, autism becomes a central part of life for those touched by it – a part of life which has a direct impact on the other parts. Those of us who have come into the autism community for whatever reason should be as understanding as possible that different people express themselves differently. Autistic kids may lecture about trains, autistic parents may lecture about autism! It’s okay that we’re not all the same! Rule of thumb in life – don’t criticize another human being without stopping to look at where they’re coming from.
The autism parents that I find most annoying are the ones that go on and on about which foods to eat and which ones to avoid. My son wouldn’t eat solid food until he was almost 5 years old and he still won’t eat fruits or vegetables. While they were lecturing us on special diets, we were trying to coax him to eat solid food.
Oh bummer, I almost never see a category on these polls which match my opinion.
I would never attend a meeting of autism parents, or other people endowed with Asperger’s like I am, or my sons and brothers are, for fear I and my sons/siblings would be “outed” at work or in the community by someone who saw me at the meeting. I learned the hard way that adults with autism who come out of the closet immediately get treated like they are retarded or something. (I certainly don’t perceive myself to be retarded; I graduated from a top college, engineer $100 million international projects and speak several languages)
I have noticed that the thuggiest gangster looking people are never cruel to my autistic child but stuffy middle aged people that think they have something to say are the safest bet for trouble. We hardly ever go out.
Comment #9 from John cracked me up. If you want to make sure you don’t get lectured about how your child is behaving, what you’re doing wrong, what magical cures or fixes are out there to turn your kid “normal,” stay away from the ivory towers of overeducated and/or wealthy people. It does seem that the less money someone has, the more realistic they tend to be about a lot of things, including the fact that some kids are simply different from others.
It does seem that the less money someone has, the more realistic they tend to be about a lot of things, including the fact that some kids are simply different from others.
Surveys show that vaccine-rejectionists tend to have more years of education, and higher incomes, than people who don’t want to subject their children to dangerous infectious diseases.
I agree with what Codysmom said, and it’s not just them either. My son had a teacher like that once, and it made things worse for him and our whole family.
As for parents giving advice,I for one would welcome advice from a fellow parent of a autistic child, because what they might have to share might actually help him. I myself share, but when the invite is there. Asides, nothing says I have to follow their advice or they follow mine.
To be honest, the parents and grandparents I can’t stand are the ones who’s children/grandchildren are normal and pull their kids away from my son like he has deadly disease.
This is a great post, and a provocative one. I didn’t take the poll, though, because my own answers are more complicated.
In the Blogosphere, I am very vocal about my opinions, both in discussing the best ways I’ve learned to help our wonderful (but still challenged) son, and in pointing out what I consider to be other autism parents’ harmful actions towards the community and our kids.
Underneath that, and in my own life (which includes email boards), I rally for empathy, community support, and understanding above all, for forming those life-saving connections, and for mentoring those who ask for it (e.g., we formed a local Special Education PTA to provide that support, and help all local special ed parents through the IEP process).
My friends and I have very different approaches to our children and various treatments, but that is not what we care to discuss when we get together. Also, I find that many of us whose children were diagnosed more than five years ago are less interested in taking over the conversation or proselytizing. We just want to hang out with people who understand the stressors in our lives.
Thanks, Lisa!
I echo the comments of Codysmom, made on 7/16/09, as well as coffee_mom1, on 7/17. My son will be 15 in September. He is (and always has been) unable to communicate with speech, has huge sensory issues and problems with ”Executive Function”, I think some ”Professionals” have called it (Google…here I come…). He can’t control his body’s movements; i.e., sandwiches or burgers get pulverized in his hand (at times he exhibits the strength of the Hulk..scary) or his vocalizations. We are shut-ins for the most part. Difficult to get out there and have dinner at Chili’s with George of the Jungle in tow, yelling at the top of his lungs. My younger son is openly hostile to him, he’s that embarrassed and annoyed. Hubby is great guy, loving Dad but pretty much avoids our Autie Teen. I’m the one who’s gone to the suppport meetings, done the interventions, damned theTorpedos, etc, for 12 years now. I’m OK with that but the friends I’ve made (other moms from ”Club A” as I call it) have all had greater successes with this or that than we have and at one point I just felt like it was all hopeless and caved in on myself. Didn’t want to hear ANYONE, ANYMORE, tell me that the GFCF Diet made *her child* talk, that this kind or that kind of vitamin performed this particular kind of miracle, etc. etc. Looking back I just found those support groups nothing more than a Laundry List of Things To Try on your Guinea Pig–oops, I meant autistic child. Not that I didn’t try them; I’ll bet we all did (and are doing). I support any and every mother of a child w/ autism, no matter what age, no mater how old, no matter how severe. I once had a just-diagnosed 2 yr old myself. The *Support* we need, in my humble-yet-UN asked for opinion (smile), is to be a sounding board to your Autism ”Sister”, to cheer her on when she’s about to try yet another intervention, to sincerely be happy for her when it seems to bring improvement to her child-but didn’t to yours–and to be quietly comforting when it didn’t work for her, either. Obviously the reason we share our stories about what works, what doesn’t, etc., comes from a place of good intentions (I like to believe), but boy oh boy when you get a ”Jenny McCarthy”(here comes my Evil Twin, I can feel her rising up inside me) out there saying how her child was ”cured” from Autism (LET ME BE CLEAR: I’ve no doubt that many mothers have gotten to the point where their child functions like any other ”neruotypical” kid after 5 years or whatever of doing the diet, taking the supplements, etc, so I mean no disrespect. My personal belief, only my opinion, is that particular child had other things going on; that they weren’t born with Classic Autism, as my son was, and because at that vulnerable age they happened to meet the ”requirements” of Autism as defined in the DSM-IV or whatever, they got stuck with the Autie label. It’s all too complicated, isn’t it?) Anyway, I just meant I have to fight my own feelings of Frustration and Anger (stemming from Jealousy, obviously!) whenever I hear some other kid was ”cured”. You know, what if my son just wants to be accepted as he is? How do we know that all these attempts at ‘curing’ them don’t make our kids feel like they’re not good enough as they are? My feeling is my son already *knows* he’s different, and he, too, gets frustrated being told to put on his shirt 6 times trying to get ready for school…he KNOWS what I want him to do; he just cannot get his body to do it!!
As mentioned above, there’s truth in genetics when it comes to autism, and the same social pieces that are hard for our kids can also be hard for parents. Once a month I go out for dinner with a wonderful group of autism moms, and we laugh over the uniqueness and craziness of our lives…but also, the moms bring their/our own levels of anxiety and perseveration and more to the group, and I don’t believe that all stems solely from raising children with special needs. I think it’s inherent in our own personalities.
I will say I am grateful to have two autistic sons. They’re nowhere near each other on the spectrum, and their development has been so different from each other that it prevents me from making mass assumptions about what will work with even most autistic children. If you’ve met one autistic child, you’ve met one autistic child. Period.
Mostly I can accept different treatment approaches as no different than all parents having different parenting beliefs…but I have distanced myself at times from people who, IMO, are endangering their child with foolish snake-oil treatments.
I have a beautiful son with Autism(first language correct way to announce it) I dont think its fair we have to expose our kids to so much ignorance out in society just so the “so called typical people” will feel comfortable so they can get “used” to our kids, please….. When someone stares I say “yes isnt he beautiful” that snaps them out of their stare:) Many blessings and love to all parents with children and love ones with all forms of Autism:)
to coffee_mom1:
YOU SAID IT THE BEST!
Dear Lisa Jo, I haven’t yet had the time to read the other comments, but would like to answer your question posed in the poll and comment.
Like in every other things in life, there is the best, and there is the worst in every “category”. The category “autism parents” has its best, and also, in my humble opinion, has its worst: I try to navigate very carefully, and stay where I feel comfortable with human beings who are not adding to my own personal stress or petpeeves.
I have belonged to online and offline groups of parents of all kinds, and I have been very faithful to some of the groups while I have very quickly gone away from others.
I tend to comment much less in the autism lists I still belong to (French speaking autism list) but I see some of the phenomenon recurring regularly, and also what has happened several years ago on English speaking autism lists I belong to reach the French community, but I don’t get involved, despite having some perspective, because it is not only time-consuming, it is literally draining.
That’s also why I moved away from only-autism communities to go to a broader world of online activities, where I still advocate and share my perspective as an “autism-parent” among other roles.
I believe that belonging to the autism community does not protect us from being sometimes obnoxious human beings to others!
However, belonging to communities has saved my sanity and I am always very thankful to the people in each and every group that has allowed that.