I’m Angry And You Are About To Get A Lecture About Spectrum Parents

Three times in as many days, I have read blogs written by parents whose children  have Autistic Spectrum Disorder or Autism.

Three times in as many days, I have been furiously horrified by the comments left by some readers.

It seems to me that a lot of folks, likely without intent (always the benefit of the doubt), are blaming the parents of ASD kids for their children’s issues or behaviors. I’ve read the subtle finger-pointing (It’s a DISCIPLINE problem!) to the overt (If you didn’t do this or that, your kid wouldn’t behave that way, YOU BAD PARENT!). It’s making me really angry.

As someone who has a family member who is somewhere on the spectrum (we know now. When he was a child, the diagnosis didn’t really exist), as someone who has friends with ASD kids and as someone who has trained professionally, and personally worked with children and adults on various levels of the spectrum, I have this to say.

It’s perfectly fine to wax on about how you would handle things if it was your kid, but guess what? Unless you’ve been there to live through a full on meltdown, you have no idea. When someone you love tries to hurt you or themselves, and that child has no control over what they are doing, when you as their caregiver have been down the same road so many times that you know all you can do is wait for the storm to blow itself out in a few hours (hopefully less than eight) how the HELL can you, as an observer, offer any advice? And how dare you pass judgement.

Fine, some of it is well-meaning. Suggesting diet things you’ve read, drugs, brain hemisphere balancing, sensory treatment, blah, blah, so on, is really not helpful because you know what? These parents have likely tried it all, including things you wouldn’t ever think of. Remember this: these are their children, their babies. Can you even imagine how painful it must be to watch your loved child struggle and obsess? To go from happy and functioning one moment to unreachable the next? It’s bad enough when your kid is typical.

Before you comment to these parents, know this. These blogs are being written to educate you and as an emotional release. These writers/parents are the bravest of the brave. They are letting you peek into a world of frustration and triumph, a rollercoaster world of highs and lows even they themselves don’t understand. Please, show some respect.

Have some empathy, some compassion. It’s hard enough being a parent. Harder still parenting a child who has special needs.

If you want to help, educate yourself. Learn. Acceptance and understanding come with knowledge. But don’t judge their parenting. Trust me, they’ve done that enough by themselves.

And always bear in mind; people on the spectrum, physically disabled, mentally challenged, wheelchair bound, brain injured, mentally ill, deaf, blind, mute, one-armed, one-legged, people with Tourette’s, Down Syndrome, PDD, ODD, FASD, dementia, etcetera, etcetera, etcetera, are PEOPLE first.

We’re all here together. That’s never going to change. Be kind.

*drops keyboard, stalks off*

52 thoughts on “I’m Angry And You Are About To Get A Lecture About Spectrum Parents

  1. Thanking you. God I am sick to death of hearing these criticisms, being looked at sideways by judging neighbours as I dram my screaming, kicking, biting, scratching child to school who was triggered by scratchy socks, or wind in her hair or having tower a hat, mitts and socks with boots because it is – gasp – 40 below with windchill. Love you mama duck. xx

  2. As a mom with a girl who has PDD, ODD & ADHD, I say AMEN SISTER! I choose not to blog about my daughter because I can’t handle the comments. Even the well meaning comments and suggestions can be stinging, because as you said – it’s not like I haven’t already tried it or just heard of it myself, thanks, duh. Glad other people understand that!

  3. Well said. I learned a lot about dealing with kids with disabilities when I volunteered for a therapeutic riding place (it has since been shut down due to lack of funding which made me cry). I didn’t witness any tantrums, but they still had their struggles. Some of tried hard for months to do what would would take me seconds. Those kids and their families are some of the bravest and sweetest people I’ve ever met. It saddens me that people harshly judge the parents. How can you honestly judge anything if you’ve never been around it before?

    Everyone’s an expert these days when it comes to ASD. My son has PDD-NOS, and most of the time I can’t even talk his problems with people because they just don’t get it. The most common reaction seems to be “When I was a kid my parents never would have let me get away with that.” As if it is all my fault thay he had a full-on tantrum in the Burger King parking lot because they didn’t have the sweet potato fries he had been planning the have since the morning when I told him we were going to Burger King. Because if I was better at discipline, it would somehow change his brain chemistry and give him the coping skills he hasn’t developed yet.
    My mom often uses the analogy of a person in a wheelchair. If a kid is in a wheelchair, does anyone ever say “he just isnt trying hard enough to walk.” Or “my parents never would have let me sit in a chair all day. He’s just lazy.” NO. Because it’s ridiculous.

  5. I have to say, judging parents no matter what, just plain sucks. Yeah, it’s easy to point fingers at folks and say “It’s all your fault, you’re a bad parent” but we don’t know the struggles that parent is going through.
    After my DD was born, I really understood that…especially after one particularly colicky week, that, at the end of, I had to grocery shop for the next, and she just couldn’t stop screaming. Everything in her little body hurt. But still, I had to pack her up and go get food. I mean, can’t keep my home running if I can’t feed the family, right? She screamed her way through the store, while I filled my cart(I had her in a Baby Trekker, so she was right up against me, which made the screaming less intense, but still loud). At one point, in the coffee aisle, one old man said to me “Will you shut that fucking baby up already! I’m sick of fucking hearing it!”…and I lost it. I screamed back at him “Fuck you! Don’t you think I’d like her to stop crying?!? Don’t you think I’d like to be able to hear something other than her screams? You fucking asshole…Do you really think I’m fucking enjoying this, while pricks like you make shitty fucking comments? Go fuck yourself! She has colic, you fuck, which means she cries, because her body hurts, and I can’t fucking fix it, and I already feel like a fucking failure for that without cunts like you fucking judging me.” And I walked away with tears streaming down my face…right into the arms of some little Greek woman who hugged me and my daughter both and said “Mama, you do the best you can and don’t listen to men who can’t understand.” She kissed my cheek and told me “You’re doing just fine.”

    Ever since that day just over 11 years ago, I have been very patient with parents who kids are, seemingly, acting out. Sometimes, it can be seen that the parents are disconnected from the kids, other times, it’s clear that the parents are struggling, and sometimes, near drowning. Those are the ones I go out of my way to say a kind word to, because it makes so much of a difference. It doesn’t take much, just a simple “You are doing a good job” or “Parenting isn’t easy, but you’ll do fine” or “Can I get that off the shelf for you?” I’ve even offered hugs to the overwhelmed. You’d be surprised how often I’ve been taken up on the offer! So the lesson here is, no matter what, have a little compassion for parents, a kind word goes far, and sometimes, that kind word can make a world of difference. Be kind! No parent wants to be looked down upon by the world around them…no parent wants to be judged-we judge ourselves just fine!…sometimes, that little word of support from a complete stranger can make an overwhelmed parent’s day.

    And now I’m get off my soapbox. 😉

  6. The snake oil assholes come out of the woodwork when I talk about my kids spectrum issues in public. Mostly, the other parents don’t judge us. Partly, this is because my kids go to a school with other kids on the spectrum. Partly, it’s because I’ve told enough others to shut the fuck up and done it loudly. I hate the judgmental bullshit.

  7. I hope I have never offended or made anyone feel bad with my comments! If I ever say anything, it is always with the best of intensions! Sometimes, giving a suggestion on what you can do is the only way I can think of to show support. Other than just saying “I support you.” which sounds really awkward to me.

  8. Rant, ON! My brother has Asperger’s and I can’t even tell you how many times his “discipline problem” was brought to our attention by well-meaning friends, family and casual observers. They don’t know. They can’t know. So they should either ask with authentic interest, or shut the hell up. I also wanted to add that parents do this to each other over kids who have no issues – developmental, cognitive, or behavioural. I’m not sure when bearing a successful set of ovaries gave each other the right to judge each other’s parenting, but it goes on and on and on. It’s time to stop.

  9. I am giving you a little clap here because I agree 100% people who think the know best when they have no idea really piss me off. Having a child with difficulties is not easy it is not anyones fault the parent didn’t do anything wrong these things just happen sometimes.

  10. I have to confess that, as a mother of girls, I wondered about boy-children who were so unruly, and thought that it might be a discipline issue, although I didn’t say anything to the parents. One of my two best friends had a boy who was VERY ill-behaved, but the other son was as nice as could be, so I knew it couldn’t be the parents. THEN, fate gave me grandSONS and I truly understood!

  11. Oh Mama you are SO awesome on your Soap Box, I am slow clapping you as I finish this post. And the comments tell you how much it needed to be said. Hubby and I are just coming to terms with the fact that our eldest, five, – bright, intelligent, big hearted, funny little tyke – may be ‘on the Spectrum’ somewhere. He’s never coped as well as other kids, never grown out of his toddler tantrums or expectancy for the world to work exactly how he’d like it. Tests are being begun, and I cry as I write this. It’s such a pain to ones heart to discover or be told that your child is not going to be ‘Normal’ (whatever the fuck ‘normal’ is) and I cannot imagine the kind of uncaring imebecile that would do anything other than help or hug a parent in this situation. I always try now, and always will, to understand FIRST. Love you Mama!

Go on. Talk to Mama Duck.

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s