What do you think of the autism mom blog controversy here?

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If you haven't checked out the politics and media representation subforum lately, go over and read some of the threads about the autism mom blogs. There seems to be a trend here, especially among those who believe the Autism Speaks eugenics conspiracy theory that the autism mom blogs are terrible for us. I've heard the moms called "whiny" and "selfish" and I've seen people say that they shouldn't want a normal life and that they must resent or hate their kids or are attention seeking. I've seen people say that because of them, if there is ever a prenatal test for autism that people will abort because they saw a blog that talked about how hard it can be to raise an autistic child. People have said that the parent's don't deserve sympathy, that they are trying to steal their child's thunder, that they shouldn't be allowed to vent and autistic people should hate them.

I don't feel that way at all, and I've participated in several discussion about it there and I was wondering if any parents would chime in, but so far they haven't. Maybe a lot of you only read this subforum, I don't know. If you haven't seen the threads I'm talking about, head over to the media representation subforum and read the threads about it please. There is one about a blogging mother and it's mentioned quite a bit in my thread about who is doing the most damage to our reputation.

Chime in there please, or let me know here what you think of the blogging moms and also the backlash against them from WP users.

I don't have time to go over and read threads right now (getting kids to school), but have read some of the blog controversy threads in that forum before. I am often hesitant to respond to many threads because there are also so many threads about how sucky all NTs are, or stupid, or shallow in many of the forums.I am not actually even "NT" by its definition, but I am not on the spectrum, so am NT by how many define it here. So, I shy out of responding a lot.
But, I read one of the blogs they were discussing awhile back, and the mom didn't really even seem like she was complaining about the child or wishing the child was not autistic at all. She was more complaining about how hard it is to get the right services provided, etc. But, a lot of posters were saying she was complaining about the kid, etc. I don't think that just by blogging about their experience that they are automatically horrible people who are making autistic people look bad or trying to get sympathy. I think that some mom bloggers fit that description, yes. But, just blogging about the experience at all does not automatically put them in that category.

I will check out some of the threads later.

I agree. I think too many people take it personally. Some mom blogs about how hard it is to raise her child or about how hard it is to deal with other people about her child and these folks think "Oh, that must mean my mom felt like that about me! That means my mom thinks I'm worthless and shouldn't have been born! This blogger is ruining my life saying all those things about me, because I'm autistic too it *must* apply to me!" Kind of like how they take autism speaks desire to find a "cure" or rather more effective treatment for autism as implying that they shouldn't have been born, etc.

I think a lot of it is paranoia and I don't mind saying so.

I tend not to go over to the other side of the board very often. When i do, I usually lurk unless I have a special interest question.

I don't have a formal diagnosis and that puts me in a weird position with some (not all) on that side of the board. I don't feel like justifying why I should get to consider myself AS, without one, and I don't usually have the energy to deal with it. Not all the posters are like that, but enough are that it makes me uncomfortable.

I don't read autism mom blogs, or mom blogs of any kind. Here is good enough for me b/c it has what I consider to be a good balance for me of being able to ask questions, and occasionally vent, without it getting too negative. I am not an overly positive person, but there is a such thing as too much of that, even for me.

I think people have a right to complain about the things that upset them, though I do not myself like/condone/appreciate/agree with their Autism Speaks all woe-is-me approach to things. That said I don;t necessarily have the same challenges that all of them do, and I can empathize with that, as a stand alone if I think about it outside the language they use.

i think the main issue is that many of them dehumanize their children when they complain about them, or say things in the heat of it, that maybe they don't mean. I don't know.

I can understand why non-parent persons on the spectrum would especially be offended by this. Even the milder complaints probably bother many with bad childhoods/parents and it probably gives them awful flashbacks.

I have the luxury of not having been diagnosed as a child, with weird parents who maybe weren't always so great but who were not like these people on these blogs. It is not for me to judge how they are perceived by people with very different life-experiences than my own. As a non-formally diagnosed person I don't think my comments would be welcome there; and in this case I probably don't have the right to invade their space on this subject.

I am a person who identifies as autistic, with a scaffolded life, with an autistic kid with challenging issues, but none that are so dire that I need to be in constant grief mode like I think the Mommies you talk about are. That puts me in a kind of middle place, where I don't think my comments would be considered illuminating to anyone.

I think NTs avoid the more chaotic part of the board for a reason. It is full of very raw pain, many times, and a lot of resentment of parents, etc. that tends to bleed out to others as a form of projection and resentment.

Enough autistic adults who can talk to parents, without becoming unduly upset, come to this part of the board to help, that I think it enables those uncomfortable with the rest of the board to get much of the benefit without the often times mutual discomfort of venturing out to the other parts.

I don't write very often or blog at all, but did respond to someone in the original thread you mentioned about parents being seen as victims. It was a waste of time. A lot of people in the thread failed to see the mother as an individual separate from her child with the right to say what she liked about her own life without constantly referencing how her kid felt about it. Others oddly seemed more annoyed by the fact she had an audience, when they didn't. I imagine some of it is TOM issues or over personalising everything like you said.

It might also be the parent-child dynamic as I think a lot of the people getting upset weren't parents themselves. Kids tend to see their parents as extensions of themselves rather than complete people. It's pretty common maturity issue with any neurotype as kids only really develop a 'friend' relationship with their parents after they leave home and are no longer dependent on them. Likewise, they can only understand them as parents when they're raising their own child. That being said, its not a big deal either way. I'm 39 and when I visit my parents for longer than 3 days, I drop back down to 13 again even with kids.

I both agree and disagree with their stance.

Agree: Absolutely those blogs do paint autistic children in the worst possible light. Usually these are parents of very low functioning children. Non verbal. Not potty trained. Not able to do much for themselves. This level of functionality is not the majority. I don't know the percent, but I'd say it's 5% or less of all children with autism assuming autism is a bellcurve type thing in terms of "functioning". So yes, unfortunately these blogs do contribute to the whole perception that autism is this awful plague and is helping to power the train headed towards prenatal testing and eugenics.

Disagree: The folks posting are not low functioning and despite being autistic themselves, they seem to have little to no concept of what it IS to be low functioning or what it's like to have to care for some one 24/7 for the rest of their lives and beyond, because that is what most of those kids will need. The parents are raising a kid who will need constant care and will never be able to be independent and may never even communicate in a meaningful way. My husband has a step nephew who is SEVERELY autistic. This kid will never even walk. He can't talk. He can't walk. He wears a diaper. He can't even use a board or cards or anything really to communicate. He's 12 now and getting too large for his parents to care for easily. It certainly has an effect on the parents who are also human beings who have feelings. Blogs can be a way to work through those feelings and vent. That is what these moms are doing. They aren't trying to hurt anyone. They are just trying to work through things and communicate and search for answers and help. And yes, there are a few who are obviously a little nuts. Those posts over there talk like the parents should just care for the child forever like this and have no feelings about it other than love for their child. That really isn't how it works. I wish it did. But it doesn't. The parents are people who have lives as well. If blogging helps them, then they should do it.

I thought about starting a blog about our family just to get a blog out there about a high functioning child to have some variety and to also show a different side of things. Thing is, no one will read it. Why? Because people with high functioning kids aren't desperate and aren't grasping at straws. You know who mostly reads those autism mom blogs? Other moms of kids with low functioning autism. And that's really about it other than folks who stumble across them while researching autism on the internet.

I found out Autism Speaks hosts blogs. I am actually thinking about starting a blog about my life as a high functioning adult with mild AS. Basically a mommy blog. I have four adult kids who are NT although I think my youngest son may have mild AS like I do although he's got great social skills and never had a problem with them. It's other little things that cause me to think that he has it. I'd talk about my kids and husband and housework and things i like and my AS when it's relevant and something comes up about it.

I am sure other people on the spectrum will read blogs about raising high functioning kids and I am sure other parents of high functioning kids will read them too. There are so many negative things out there about autism because people will always talk about the negative and the negative always stands out more than the positive people think that is what autism is for everyone.I often don't read mommy blogs unless linked to any articles from them. I am curious to know what is the percentage of these autistic folks. I know the violent ones are rare but it seems so common because I often hear about it from parents who post about it online so some people think that is what autism is and it causes bigotry and prejudice. Also don't forget that some kids who are autistic may have other things going on than just autism. Frankie had Asperger's but he was violent but he had ODD and possibly conduct disorder and I have read that ODD leads to that condition. I think his main issue was ODD because that seemed to cause him the most trouble and his mom said his AS was mild so I think okay it may have been mild but his ODD sure wasn't so it's always a slap in the face when people say how this is a BS condition. I know it's real because I knew someone with it and it was terrible. It is more than questioning authority, it is more than free thinking. He was considered to be mentally ill by my therapist when I would talk about him in the office and he said that wasn't AS, that's not autism, that is a mental illness. No kid tries to get their way through being abusive and violent, even an Asperger's child doesn't do this either.

IMO I don't think people who are on the higher functioning end can speak for the low functioning because they have never experienced it and don't really know what it's like. Just because we are on the spectrum doesn't mean we can speak for everyone on it and pretend to know what they are going through. That will be like me trying to speak for everyone who has OCD or has anxiety and say I know what they are going through. It's a spectrum and everyone with it is different and that goes for OCD too and anxiety disorders, I also view those as a spectrum, their own spectrum. No I don't know what it's like raising a kid who needs around the clock care or having someone who is creaming all the time or doing self injuries all the time or having someone who is beating you up all the time. Sure I can read about it or see it on video but that doesn't mean I will know what it's like. I just feel sympathy and can't imagine being in that situation. I just imagine I would go batshit crazy and be one of those parents who ends up killing their autistic child despite being on the spectrum myself because I know what happens when I get so stressed out, I started to go crazy and say stupid things and get mean and start threatening everyone and I even get violent thoughts and get intrusive thoughts about it and they keep going on in my head and never goes away, it's hell I tell you. That is what stress and tremendous anxiety does to me and I was getting really close to killing our puppy once we had but luckily mother nature killed him before I turned into a sociopath so my life was saved. if I were religious I would say it was god doing me a favor and helping me out by deciding to take the dog to heaven because it was the wrong time for my dad to get a new puppy because he got impulsive and bought him because of the low price and I may have eventually killed it because I couldn't take the stress anymore and the anxiety my OCD was causing due to the dog peeing in the house and wouldn't stop and I kept having thoughts about doing it and they were getting stronger and stronger. Honestly I think I would be more concerned about myself than for my child if I were in that situation. I am afraid I would have to use threats to get my way because they have worked before in that past and some have backfired because I nearly got hospitalized once for threatening suicide, my parents made sure they never had guns around and that my grandparents kept theirs locked up and that my dad kept his insulin at his parents house and took it up there so I had nothing to kill myself with. I would probably threaten to harm my own child just to get help and services I need. Maybe more parents should start using threats to get help for their autistic children than attempting to kill them.

But if I were to have a dog now who wouldn't quit peeing in the house, I would have just gotten rid of the animal, not kill it and I would have kept it outside or in the kennel if it had to be inside. But because I was 16, I didn't have a choice them so I was forced into a situation and it drove me literally crazy and I had violent thoughts about that animal. I couldn't do a thing about it because I was a kid so I couldn't just get rid of the pet and I wasn't allowed to do my solutions like keeping him outside or int he kennel because my family felt it was cruel to always keep him locked up and keeping him outside all the time, he would have just herded cattle in the field. I wonder if things would have been any different if I had just threatened to kill it if they didn't do a thing about him but I was afraid of being sent away and hospitalized so I kept my feelings to myself and my threat. I think now they may have just rehomed the dog if I gave them that threat but because my mother had threatened to send me away, I was scared.

But back on topic, I think people on the spectrum act like parents have no right to be stressed out and overwhelmed and how wrong it is to feel that way. I don't understand why it's a slap in the face for them because are they that way? Do they do those things? Are they that severe? Or are they worried about how much they may have put stress on their parents and a burden? But there are some people on the spectrum who do understand because they have been in a similar situation or they have a child that also needs around the clock care or is also severely autistic so they understand and have empathy for those parents. So their opinions about them are not as harsh and I can say I have been in a similar situation except it was with a puppy who liked peeing inside and I think he may have been one of those dogs that liked peeing in the house and we did try to train him and we always took him out but he would run inside and pee right away. I have met other dogs that do that too so the owner's house smells like dog piss and the dog picks a certain spot to pee in so that room reeks of dog urine. Not my home, I don't live there so not my problem so no anxiety. So I can understand more how the parents feel and I feel stress for them myself and i think they must be tough for not going crazy. I even empathized about the mother who talked about driving off the bridge with her daughter in the backseat but what kept her from doing that was she had another daughter at home. I wanted to kill my dog but what stopped me fro doing it was fear of getting hospitalized and my parents abandoning me.

I had heard from my husband once that some kids are so severely autistic they can't even walk. That must be pretty rare because I have never heard of it.

I don't read a lot of blogs, but I think I would prefer the type that talk about how much they love their kid with autism and how special and talented he/she is and how they wouldn't want him/her any other way. As opposed to the ones that talk about how UNBELIEVABLY HARD it is to parent a child with autism, without considering how the child must have it much worse. I don't actually know an example of this type, but according to others on this site they exist.

Of course they talk about how much they love their kid and how special he is and if they kid can do anything them I'm pretty sure they talk about a talent, but what I take issue with is the part i have bolded, italicized and underlined. I honestly cannot imagine the parent of a low functioning autistic kid to even think, let alone say, that they wouldn't want him to be any other way. That would be horribly uncaring and mean of the parent. They would basically be saying that they are glad their child is unable to talk to them or to do things that other children do like play or read a book or even use the bathroom, because when a child is severely low functioning, that's what things are like. If I heard a parent saying that they wouldn't ever want their very low functioning kid to ever be any other way, I'd call DHR so fast on them, because the parents would just be wishing more hardship on their kids and nobody who loves their child would do that.

I'm not saying that it's hateful to say that about a moderately or high functioning kid. But a low functioning kid that can do nothing for himself and can't even enjoy anything in life? No. Thats horrible to wish that on a kid. Look at the mom who puts videos of her very low functioning adults son on YouTube to vlog about how life is for them. Do you think she is, or should be, glad that he's that way? He can hardly communicate, he can't do anything for himself, he melts down many times a day, so you can just imagine the pain he's going through to cause that, and to be glad he's like that instead of a kid who can function and enjoy life would be crueler than I could imagine.

You can love and be proud of your autistic child even while you are wishing he didn't have autism, you know.

I would guess that the bit you highlighted is hyperbole or some other form of imperfect speech. I love my son, but I would have loved him if he were different, too. Putting aside the autism for the moment, parents of NTs say stuff like that all the time, and they do not mean They wouldn't love their son, if he was a daughter instead, or didn't love had other interests (Well, wackadoodles might mean that, but you get the point.) This is a hyperbolic statement that means, "I love my kid for who he is."

That said, I do not think it is is some form of hate speech to admit that you wish that the challenges were less challenging. There are a lot of things about myself I would change, too; and it is not a form of self-hate to think that.

The harder the challenges, and the more of an obstacle they present for the parent (and the child) the more likely one is to wish that particular trait or behavior disappear or it least be lesser in severity.

I can love my child and still wish the road was easier. That is not hate speech of any kind either. I wish life were easier for me, too. It is ok to wish that. I do not think it is akin to wishing one had a different child.

Like it or not, in real life AU/AS in a great enough severity is an impediment. There are gifts, and there are good aspects but that does not mean that it doesn't make life harder for many. That is the bulk of what we complain about here, and from my lurking; these difficulties are also discussed on the other parts of this board.

If AS/AU were so damn easy, this board would have little on it other than self-congratulatory statements.

It's also a form of child abuse to not get your kid help. I can understand if the parent didn't have money but the parent still does their best to help and what the state offers them and I am sure those parents of those LFA kids do their best trying to help them. But to out flat refuse to do anything and to turn down help the state offers and what social services offer and to refuse to do any work themselves is child abuse.

Yes, it was a bit of hyperbole. All I meant was that the parents don't wish for themselves that their child was more "normal". I certainly didn't mean to imply that parents wouldn't love their children if they weren't autistic.

That's true, it is okay to wish your child had an easier time in life. But we have no way of knowing that just because people are low-functioning, that they're miserable. Maybe they have things that give them genuine joy, and truly enjoy life. Maybe they might have meltdowns sometimes, but are able to enjoy life at other times. I have meltdowns sometimes, but at other times I am able to forget them and be happy.

Or they might be miserable. If people have very limited communication skills, it's hard to tell what they're thinking. I hope we find a way to help low-functioning autistics communicate their feelings. That could be the key to improving life for them.

Parents should definitely try as hard as they can to understand their child and to minimize his/her difficulties--that's probably the best they can do. But they should do this while still accepting their child's unique thought processes and the person he/she is--because low-functioning doesn't mean you're miserable, and many more high-functioning children have difficulties too.

I try to avoid as much negativity and poor information about ASD as possible because I'm lucky I don't spent the next few days bawling my eyes out or boiling with rage. Yes, I know ignoring it won't make it go away but there's nothing I can do anyhow, so...

Not long ago someone on Facebook posted how difficult is is to raise a child with Autism, and I replied that raising a child is difficult no matter what.

Would you mind the negativity if it was coming from people with autism instead of their parents? I think the parents have a right to be negative. Their child is suffering or at least having problems because of the autism and any time that your is suffering you suffer too. You hate whatever it is that is bothering your child, even if it's a cold that makes them miserable and stops up their nose.

Also, the parents who have to do the intensive 24/7 care that goes very far beyond what most parents have to do, have a right to vent and be heard. Their child's autism is affecting their life and while they love their child and in wouldn't take anything for him, it's probably exhausting. More exhausting than regular parenting which is VERY exhausting (I had three in diapers at once, my oldest was four years older than the other three and those three were about 18 months apart). I think the parents have a right to be heard and to vent. They are so caught up with their child and working with their child and doing for their child that they don't really have time to sit around and talk to friends or family about things. Their blogs are probably their way of blowing off steam or feeling like they are still part of the world outside their home. It's probably a very isolating feeling. I know that being home with my four kids was isolating and they were NT kids (I think my youngest son may have a touch of AS like I do but he's not interested in going to the dr to find out) and at the time I thought I was NT too, as I hadn't been diagnosed or even heard of AS yet. I can only imagine how isolating it would be to be home with any child who needs a high level of constant care and a disability that may or may not respond to treatment and there is not a whole lot of hope that things would get better.

I think it is fine for parents to say that they wish their child were not autistic.
I also see no problem with criticizing people's parenting approach or parental decisions.