Every so often a list goes around Facebook usually stuff like this one that found its way to me recently
– “Reasons Not To Mess With an Autism Mom.” Others include, “things not to say to an autism mom,” and such and they drive me crazy. They amount to nothing more than a point by point pity party dressed up as a fierce declaration of strength that relies on thinly veiled threats and poor excuses for poor adult behaviour. Worse, in all of these lists that I have seen, autistic children are described as nothing more than energy vampires sucking life and humanity from their mothers (it’s usually all about the mums).
And let’s talk about “us” of these lists shall we? I am the mother of an autistic child but I now cringe at the term “autism mum” or “autism mom” because a subset of mothers who have hijacked those terms have taken it upon themselves to speak as if for all mothers. Yes biomeddlers, mercury moms and misery mums I’m talking about you. I don’t want to be lumped in with people who dehumanise their own children for the sake of a lost cause. Further, these lists and many groups for parents of autistic children seem to totally overlook the fact that – shock! Horror! – autistic women exist and some have autistic children too.
So, here’s my, from the gut, reaction to the latest lousy list:
1. Some of us have given up on social skills and don’t care what we say or do.
I care very deeply what I say and what I do especially in front of my child. That’s not to say I do not address ignorance or discrimination when it occurs but I certainly take great care in how I do so. Really, is effing back at some ignorant individual going to achieve anything? Does it really make anyone feel better or shame the offender? What happens when your echolalic child, in the cutest voice chimes up with “fuck you douchebag” over dinner a couple of hours later? Behave like you have no social skills and don’t give a flying one what you say or do and you are doing nothing to dispel the myth that autism is down to poor parenting. You might have “given up on social skills” but I certainly have not. Point is, if you think it’s OK to choose to be rude and anti-social then that’s up to you. Don’t blame the fact that you have an autistic child for your arsey behaviour.
2. We’re not afraid to have a serious “meltdown” of our own.
See point one. Want the person who pissed you off and everyone within earshot to view you as the “crazy lady with the crazy kid?” then, go ahead, have your meltdown mamma.
3. We are sleep deprived and already defensive, and we spend all of our patience on our children, doctors, therapists, social workers and teachers, why would we waste an ounce of it on a total stranger?
So which is it? You’re not going to waste the little bit of energy your child hasn’t sucked from you or you’re going to have a meltdown? There have been plenty of occasions when I have felt horribly let down by professionals involved in the Pwdin’s life. I have taken a few people to task over it more than once. Some battles are still being fought but, you know what? Not every professional is an obstacle in our lives. Some have been a tremendous help and offered us a great deal of guidance and insight. Take Pwd’s ladies for example. There are times when I’d be lost without them and the teaching staff at his school are nothing short of marvellous. Perhaps you, too, might gain something if you didn’t discount people so off-handedly.
4. We have a far shorter fuse for nonsense as a result of our responsibilities but a FAR thicker skin….
Do “we” have a shorter fuse? I think I’ve become a far more tolerant and patient person since becoming a parent. I don’t suffer fools and am quick to address real issues that affect our family but that’s not actually having a short fuse. That’s being efficient. Every parent has huge responsibilities. Certainly, our autistic kids might need different things but don’t for a second believe that parenting any child is easy. Stop “othering” parents with disabled children. Also, if your skin is so damn thick, why the hell do you need to write these silly lists?
5. We can get you in a hold/lockdown position in less than 3.5 secs.
Boasting of your expertise in physical restraint makes me suspect you may not be a safe parent. There are times that a child may need to be removed from a scene for his or her own safety but physical restraint carries with it significant dangers every time it is used. If you think you’re that much of an expert in its deployment, that you are that well practised, I think you have serious parenting issues to address and I pity your child/children.
6. We can shoot you a look that would make a linebacker tremble in his boots!
So? Looks don’t really kill.
7. Chances are it’s been awhile since we’ve had a full night of sleep and that will give us a reason to plead insanity!
Trying to function on little to no sleep is horrendous. I know this. I experience this regularly and in very large part due to the odd sleeping habits of the Pwd. I’ve also been known to lose it big time at the slightest little thing when I’m in that state. It’s forgivable. Making “volatile” your default and planning your “get out clause” : not forgivable.
This point amounts to tacit threats and excuses for violence. Classy. In my partying days I could I have fallen back on the sleep deprivation thing? I would have had a hangover too so I could get away with anything, right? Add PMS into the mix and I could have gone on a killing spree and been out of jail for the next weekend of drinkin’ up and boogyin’ down. Stop blaming the fact that you might be a bit unhinged on your autistic child. Anger management might help.
8. Our tolerance and patience is for our children who didn’t choose to have special needs, not for someone who CHOOSES to behave inappropriately and is ABLE to control their actions.
You are someone who CHOOSES how to behave and is ABLE to control their actions but point after point of this stupid list is about you relinquishing responsibility for your behaviour using your autistic child’s existence as an excuse. Be an adult and grow up.
9. Wherever there is a cub, there is a mama bear….We’re always watching.
I’m not a bear. Can I be a flamingo?
One more point…
I’ve seen a few versions of this list but took the one above to use in this post as it was the least repetitive (believe it or not). Since publishing this I’ve been told that there is a 10th point on this list.
10. We’re already angry at whatever gave our children autism.
That point alone could take up a whole post but I’ll sum it up, no “we” are not.
Autismum 
Seriously, it’s never about their child, is it? It’s always about THEM.
How THEY’RE exhausted because THEIR child has sucked the life out of THEM by not acting the way THEY wish the child would.
How about THEY stop feeling sorry for themselves and cut the goddamned pity party short – their CHILD should be coming first!
People can be really nasty and I’ve gone ballistic a couple of times but the times where I’ve stayed calm, and made people think about their actions are the times I’m proud of. Who would boast that they’re going to have a meltdown? Ridiculous.
I dont feel for most of us our childs behavior isnt the issue; but for me it is the agressive, impulsive which is usually dangerous and sometimes expensive I want him to become the best member in society to his capabilities. Because my son has autism isnt an excuse to not teach him what is proper behavior and what isnt to realistic expectations. It is more demanding and exausting due to the increased amount of effort used. Of course my intentions are not to fix or rewire him. If we are in public and needs to hollar and jerk his arms that is acceptable but throwing something because he isnt getting his way is not. He is very verbal so I remind him of his manners. With a child with the extreme impulsive agressive tendencies if I wasnt exausted and stressed trying to teach him to be the best person possible then I would feel like I had failed him That is putting him first. It is done for him and not because he embassases me, or dread the publics reaction. Screw em they dont deserve to have an opinion about him or to hurt his feelings.
Aww Autismum I love you.:-) You are so right and your words are so grounded. I raised a juvenial Diabetic from age 4yrs on. I slept with one eye open too, I suffered through the middle of the night seizures from hypoglycemia too. So what? ALL mothers of children who have special challenges go through this. Why do these list makers think they are unique? If it’s really about the child, these other issues will always take a back seat to ANY discomforts the mom is feeling. My daughter is now 28 and a physician. No matter how successful she becomes I will always be concerned about her health and well being. This is what ALL parents who really care do naturally. We don’t sit around making silly lists about OUR sacrifices in taking care of our child.
Thanks.
I do get the being horribly knackered – I feel it! I’ve charged in and got caught in slanging matches before now especially when tired. It never achieves anything but I don’t beat myself up about it. That’s not the same as giving myself permission to do it again.
It’s funny isn’t it that we can get so much from our shared journey of loving and raising and supporting our autistic children but the warriors might as well be bullies. I don’t like people who assume that you share their dogmatic views on how it is or should be – no matter what the ‘it’ is. So, yeah – I like your list much better.
Thank you.
I behave badly with reasonable regularity but it has nothing to do with the Pwd – I’m just horrible 😛
Just one thing. You are amazing, the Pwd is amazing and your hubby is amazing too. Ok, three things ❤
I should write a list :things not to say when I’m in a mood with hubby. He’s hard work at times
My partner’s ex-wife is a huge fan of these sorts of things which tells me all I need to know about them. It’s ALL about her and she LOVES being a martyr.
It’s the universal “we” and “us” that gets me going. I don’t think any mum should beat herself up if she snaps at the umpteenth person to make a stupid comment but to plan to do it – to put it out there that this is exactly what you’ll do is plain wrong. I’ve been on the receiving end of ignorance more times than I can remember and more often than not when you tell someone, actually, my child is autistic, they apologise. Not always the case but usually it is *just* ignorance and not malice.
Love it!! Thanks
Thank you xx
Why must our community be so divisive? Why can’t we just support one another? You can lampoon these lists all you want but to what end? I am tired of people telling me how I’m supposed to feel about having a child with autism. Having a child with autism IS hard, no matter how you slice it. Watching my son struggle socially, physically, emotionally is hard. Watching my non-speaking child suffer needlessly, because he can’t tell me where it hurts, is hard. You can mock all you like, but it doesn’t change my reality, or the reality of others who are struggling to make their children’s lives easier every day. I think the “bullied” have become the bullies, and I, for one, plan to set a better example for my son. Signing off now, with the intention of steering clear of any autism site that belittles its members. The last thing I need is one more person in my life telling me how I’m supposed to feel.
“Why can’t we just support one another?” You ask. I am not supportive of people who claim to speak for me when what they say goes against who I am, how I behave and how I see my child and my life.
I wrote about this list because it pissed me off. This blog is a place where, among other things, I write about things that piss me off. It is not telling you nor anyone else how you’re supposed to feel it’s about how I feel about lists that imply that it’s alright to behave appallingly in front of an autistic child – that sinking to the level of those who do not understand or care is perfectly acceptable. It is not. It suggests that parents of autistic kids do not need to set a good example for them. It presumes their incompetence and that makes my blood boil.
If you have read any other posts in the blog you might have realised that my son is intensely autistic.He, too, is not verbal. My reality is wondering where he hurts, what he needs and why he’s hurting himself, why he is hurting me. Does that excuse me from behaving like a responsible adult? Does that mean he deserves for me to make a huge show of myself in public? How do you imagine that would affect him?
If you, personally, have felt belittled or mocked it may be that this post drew your attention to something in your behaviour because the only people being mocked are those who write such inane lists.
…or inane responses to lists. I think our time, collectively, could be a lot better spent. It’s a shame, because I share your views about presuming competence, absolutely. I think if we’re setting examples for our children, one example could be accepting that people have differing points of view, and it’s okay to disagree. I don’t condone this list…it certainly doesn’t speak to my point of view, but I respect this mother’s right to her opinions. I think I should probably remove myself from your page, as I don’t feel comfortable expressing an alternative point of view. Besides, there is too much negativity…we take people outside of our community to task for being judgemental, I’m finding that nowhere is there more judgement taking place than from within our own community. Thanks for letting me express my point of view, and all the best to you and your little one.
This list is an amalgam of at least three lists and I’ve seen several versions of it – some as much as 15 points long. I chose this version because it is the least repetitive. Had the author(s) chosen to use “I” not “we” and “me” not “us” then my response would be rather different.
There have been too many times when I’ve lost it and I’m sure it’ll happen again but I will have to forgive myself for it – not congratulate myself for being a “mama bear.”
I’m sorry that you want to leave my page as I have enjoyed our discussion and always appreciate feedback.I will continue to ensure that debate and discussion are welcome here and on facebook too should you ever change your mind. And I too, wish you and your’s all the best for the future xx
ok I have to ask because I have read several articles bashing the five things list that see no revalence, cant read anything that describes their daily life. Moms that dont agree which end of the extreme are you at? After the first article told me I was wrong for my feelings, I wrote a couple of pages into my reality in case anyone is confused.Just like with most things there are extremes. For me the article is my life times 20 need some examples? I have pages worth. I have spent five years feeling like noone understand how I feel its lonely.My friends and family listen but i know they never got it because they havent lived it……The article describes my life in full I asked my friends and family to read it now they understand alot more. You moms have got to get that if the article makes your world seems so much worse than it is then this is someones reality and it makes autism sound so bad maybe she needs some understanding more than a mom that isnt as stressed. It was never intended to classify all autism into this extreme catagory. I’m sure everyone knows no two kids dont show the same two symptom to the exact same degree. Reality ladies it does exist it exist for me every day for the past four years
I’m not sure why I have to be at one end or the other. If your question is whether my son is “high functioning” or “low functioning” (terms I hate) then he is “low functioning”. He doesn’t know his own name yet will be 5 in the Spring.
In terms of how I feel, I’m not at one end of a spectrum or another. There are days when I am utterly stressed and days that go well. Being an autism parent, just like any parenting, has it’s ups and downs. On a really bad day, I can behave appallingly like the behaviour noted on the list but that’s nothing to be proud of. If we mums want to be the best advocates and then allies for our children then we can’t let them or ourselves down with ridiculous behaviour. For every ignorant person who makes a dumb comment and whose mind you will never change, there could be many more watching who could learn something. If the lesson you want to give is “stay the f**k” away that’s your choice but it’s one that will only increase the very real isolation that parents of disable children and, often, the children themselves, feel.
The articles I read really made me mad because my son is the extreme with the innappropriate behavior though he is very verbal, sight and sound doesnt bother him. because of his impulse reasons and agression the leval of of hectic, frustrated and stressful days are my normal. They were implying things are not as bad as the article was implying for them maybe not but for me it is because of the differance in each child. I will always defend my child against a world he knows nothing about. I have no problem saying something to someone that thinks they have the right to be cruel to but in the right way. It’s more the point of point out what they did wasnt right, If everyone ignored all rude comments then it would be accepted and it might possible make them think next time and protect the next childs feeling.
Not once have I suggested ignoring rude comments (though sometimes you have to). I defend my child I just don’t do it in an hysterical fashion nor by flowering myself to the level of those willing to judge and attempt to intimidate. I’m no push over. What I don’t condone is giving yourself the ok to behave like a twat in front of your autistic child. Yes, I’ve lost it on more than one occasion but that is not ok. I’m not going to beat myself up about it but I’m also not giving myself the green light for a repeat performance. Seriously, if you think that a “mommy meltdown ” is the best or only effective way to deal with the ignorance of others then I suggest you take an anger management course and get some assertiveness training.
lol I dint say you suggest ignoring rude comments ….other moms bashing the 5 list. I never said anything a “mommy meltdown” yelling at someone or cursing at them. I dont put on my spy glasses and try to catch everyone that acts stupid. My son doesnt completely understand everything but other special need kids and people do. if im presented with those situations I usually just point out mamn or sir the comment about my son could hurt another childs feelings he has autimn he didnt understand . I feel I can defend him and still be a lady.You are ok in his book if your smiling.No absolutly never act more ignorent than them and if some circumstances confirming their thought of us being a bad mother. I said nothing to give you the idea that Im im agressive in the least and saying I’ll defend my son or that I have no problem saying something is a very far strech to needing anger management. Any mom of any child should never verbally assault anyone in front of them; but always standing by is being a doormat and implies it is ok for people to treat them unfairly. There is a balace between agreesive and mat as long as it is respectful. I want my children to even stand up to me if they feel I treated them unfairly, as long as the conversation stays positive and respectful I will listen and consider what they have to say. The times I dont agree I expect a yes mamn and that they accept my decision. Even when I recant Ill be proud of them for questiong me when they felt wronged.
I meant you generally not personally, my apologies! Frazzled and on the phone (pwds @ home and I’ve not had 5 mins). Thank you for taking time to comment and I agree no one should be rude about my boy. He too loves to use his voice though he has no words. People complain that he’s screaming when really o think he’s trying to get an acoustic sense of a place. I have been known just to join in with him.
Orac has a post up about these rude “martyr warrior moms” who indulge in pity parties. I’ve posted on Respectful Insolence and linked to your blog, Autismum.
http://scienceblogs.com/insolence/2012/12/07/a-simultaneously-sympathetic-and-unsympathetic-commentary-on-an-antivaccine-screed/
I think posts of the nature, “Reasons Not to Mess With an Autism Mom” are generally written from a humorous point of view. Perhaps I’ve not taken them as someone making serious threats, or really staging a public outburst, more of a comedic representation of their inner dialogue. Seems silly to highlight them and critique them point by point. Unless you just want someone or something to bash so you can feel smarter/better/more mature.
Or because they irk me and I don’t find them funny. Also, do you think you might be projecting a bit?
No. No I don’t. But you irk me and I don’t find you funny, but I’ve yet to write a post tearing you down, point by point.
Go for it. As long as I amuse myself, I’m content.
Yeah “go for it” MamaAspie. Let’s see how “funny” your lists are.
Been trying to find the words to express how devastated I am that a random stranger on the internet doesn’t like me. They have come to me now : not a bit.
Mom catches caregivers abusing her autistic son. Suspects trying hard to deflect abuse caught on tape by attacking family and blaming the autistic person.
RE: Mom: Abuse of autistic son ‘such a betrayal’
I hope this doesn’t just get brushed under the carpet, like so many cases of abuse directed at spesh people does.
Ba3tard best get jailed. And if/when he does, I sincerely hope he gets s******** b* b** b**** b**** until his a*** he coughs up blood and fecal matter.
What a disgusting oxygen-embezzling sack of feculent sewage.
http://wwwtest.signonsandiego.com/news/2012/sep/21/tp-mom-trusted-abuse-suspects/
http://www.hlntv.com/video/2012/09/27/caught-tape-autistic-man-allegedly-abused-caregivers
Michael Garritson RN who abused autistic man by gouging his fingers in his eyes, pulling his hair and dragging him to ground, a move that could’ve broken his neck and most likely would’ve been blamed on the autistic person.
Thank you for commenting.
You will note that I have edited some of the imagery used in your comment in accordance with my comments policy.
I too, hope the abuses you have pointed out do not go unpunished. Sadly, crimes against people with disabilities rarely get punished to the extent of the law.
I think this list is being taken too serious!!!! It is meant to be funny. I am a autism Mom and i don’t do any of the things on the list. I have seen this list on many sites and they are funny sites meant to find humor in them. WOW!!!
May I add to one of the points above, Autismum?
5. We can get you in a hold/lockdown position in less than 3.5 secs.
Really. Did you get that experience through having to hold your child down so many times? If so, I’mma call Social Services/Child Protective Services right now since no child will fight that much unless being caused significant pain, and if you are the person causing that pain, then you are very clearly an unfit parent.
AUTISM IS CAUSED BY BAD PARENTING. IT’S NO MYTH. STOP AND TAKE A LOOK AT YOURSELF IN A MIRROR. YOU ARE CRAZY FROOTLOOPS. IVE NEVER SEEN AN AUTISTIC CHILD COME FROM A NORMAL HEALTHY FAMILY. ALSO YOU ARE ALL REFRIGERATOR MOTHERS. ITS NO MYTH. YOU JUST WISH IT WERE.
Linda? do you have any science to back up these claims? you are a nasty piece of work and have no right to call people names or bad mothers. No mother has the right to criticise another mothers parenting. Furthermore, medical science is yet to determine the cause of autism as there is no substantial evidence to suggest that autism is caused by environmental, genetic factors or immunisations. We just don’t know enough about it yet. I know many fantastic parents that have autistic children as well as ordinary children so you cannot blame parenting. Especially when their are many intelligent, well adjusted and successful people out there that had really lousy parents.
CAPS LOCK CRUSADER.
I supervise a waiver program unit, and to be honest the abuse my staff receive from some of these parents is unbelievable (this, mind you, is when our staff is only working hard and trying to help (
Abusive language, threats, harassment.
I would venture to say that some of the parents could benefit from social skills training.
Hello Autismum,
Whilst, I do agree and some of your comments and some content on your article. There is just something that amused me about it. I do agree wholeheartedly that it is unacceptable behaviour to act out publicly in front of our autistic child as we should be setting an example for them, I can proudly hold my head up high and say that I have never done it and always held my tongue even when frustrated by professionals and felt let down by the public health care system. BUT..having said that, I certainly don’t agree on judging the behaviour of others. Attacking other autism mothers from the comfort of your own computer just because something “irks” you about the behaviour of others. I am not a doctor or psychologist of any kind but based on my experience of human behaviour and a little common sense, I can tell you that everyone copes with stress differently and everybody has their own personal issues to contend with and I don’t feel it appropriate to criticise and judge other mothers behaviour. Everyone has the right to their own opinion, I agree but I really feel uncomfortable about the idea of a blog dedicated to the scolding of women who handle stress differently. I have a 4 year old autistic daughter who is verbal but hits, bites, scratches and she gets quite violent so I understand why some women lose the plot themselves. I have developed depression and anxiety from dealing with my daughter and no matter how much love and support and attention I give to her, that is something I cannot help. If women wish to have a vent to get out their frustrations there is no shame in that and I do not believe they are trying to make it all about them. The thing is, it is not all about the child either. If the mother doesn’t look after her own mental health as well, well then what use is she going to be for her child? I know some autism mothers have wound up in hospital in the psychiatric ward because they couldn’t cope. Again..they are doing the best they can and it doesn’t mean they are selfish. We really do need to support each other instead of attacking one another on a website. It is nothing short of cowardly and trollish. Yes, I am attacking you a little but only because you dedicated a whole site to making autism mothers feel worse than they already do. So congratulations, you have succeeded. You are entitled to your opinion but maybe you should have kept it to yourself instead of starting a public argument. It’s called a journal.
Tone policing and telling me what I should and shouldn’t put on my blog, which, if you read more than one post, covers a number of topics. Nice. You’re not cowardly or trollish at all, are you?
I see this older but I think it’s amusing that when someone doesn’t particularly agree with you, you get a bit defensive. You behave defensively & condescendingly…maybe you should heed your own advice.
Hypocrisy at its finest…which is the biggest problem as Autism mom’s go. Passive aggressive behavior can also require anger management/therapy.