Twenty Things NEVER to Say..

I am a compulsive list maker. At any given moment you can find at least five different lists around my house that I am vigorously working on – lists ranging anywhere from the mundane all the way to the more serious of topics. None of my lists are definitive. I am constantly going back to them and adding notations. So obsessed am I with the task of list making that I even have a notebook dedicated to this habit of mine. Among its pages you can find topics such as these: “Things to do this Summer”, “Crafts I’d like to try”, “Projects that need to be completed (sales – time sensitive)”, “Questions I’d like my daughter to one day answer”, “Mia’s accomplishments”, “Why I love so-and-so”, and this one; “Things never to say to an ‘Aut-mom’ OR, more specifically, me.”

I have been compiling the latter of these lists for a little over a year now. I started assembling it after an old friend made a comment to Roger that just didn’t sit right with either of us. I only ever add to it after I have been asked something I find “offensive”. There is not one statement on this list that hasn’t been spoken to either Roger or myself.

The person whose comment started this all really meant no harm and I understand that. I understand that some of these utterances are spoken with the best of intentions. Most times they are not meant to offend. Most times they are spoken out of a genuine desire to understand Mia or for want of making us, her parents, feel better about our supposed “sad situation”. Most outsiders perceive our lives as something worthy of their pity so they speak out of a desire to try ease our supposed burden. Others make strange statements out of an uneasy attempt to discuss something way out of their comfort zone. And then there are those people whose motives I do not understand, and probably never will.

My reason for publishing this list is not to call anyone out on statements that may have been said to either Roger or myself. I have not noted who said what, or when. I am only publishing it now out of a desire to hopefully enlighten those of you who often, or not so often, deal with parents of children on the spectrum. And although I can only speak for myself, I know that all of these statements were words I would have rather not dealt with. Maybe my publishing them now will save another set of parents from the awkward, and sometimes heartbreaking, challenge of having to find an answer.

As everything in life though, this is not a perfect list or an authoritative list, it is ever evolving and changing. Maybe I will add content to it over the years – new questions, statements, or phrases I have been asked since the publishing of it, or maybe I won’t, but either way I can assure that over time it will not be the same. Nor, can I promise you that all of these questions will prove to be offensive to every parent of a child on the spectrum. The only person I speak for is myself; and personally, I find all of these utterances to be.. irritating (at the least).

(Twenty) Things NEVER to say to the Parent of an Autistic Child (or, more specifically, me.):

1) “What is she REALLY good at? Does she have any special ability? You know, dates or numbers. You know they are all good at something. Kind of like Rainman.”

I know this person means no harm. I know they are just trying to get to know what Mia is interested in. But, this is stereotyping. I’m not a fan of stereotypes. And not all Autistics excel in a particular subject. A better question would be, “What does she like to do?”

2) “How much does she cost you?”

I know that studies show that children with disabilities cost parents more than an average child but this question rubs me the wrong way for a number of reasons. One, I think it is a highly personal question. Two, I don’t tally up every cent I spend on Mia’s “Autism” related needs. What would be the point? Three, aren’t all children expensive?!

3) “Do you ever wish your child was tall, thin, pretty and normal?” (This one is a direct quote. Verbatim.) 

This is the most offense question I have ever been asked. I still don’t know why anyone would EVER think it was an appropriate question. All I could respond, through clenched teeth, was “I think my daughter is beautiful. And I love her. Autism and all.” I’m not sure my heart has ever beaten faster or if I have ever seen in a more crimson shade of red. Ugh.

4) “I don’t know how you do it. I really never could.”

If loving and caring for a child is something so foreign to you then maybe you shouldn’t have children. You know, there is a chance you won’t produce YOUR ideal idea a child.

5) “Will she ever be able to learn?”

This is highly offensive infantilization. It really just implies that she is not capable of any coherent thought. And it is dead wrong. Not only has Mia been learning since she was born (just like everyone else) she will continue to learn as she grows, infinitely.

6) (Upon seeing some of Mia’s various works of art or otherwise) “Did she REALLY do that by herself?”

I know Mia needs support in various areas but saying this with a shocked look on your face really irks me. It means that it comes as a surprise that my child is capable of putting pen to paper in such a magnificent way – why is that surprising? Why shouldn’t she be able to?

7) “Will she ever have friends?” (Other variations include, “Can she make friends?” and “Will she ever be able to fall in love/have sex?” Yes, I was asked the last one.)

Yes, she can make friends. They just need to be willing to open their minds up to a different idea of friendship. And, as a matter of fact, she has friends. Lots of them. Asking is she can feel love, of course she can! And, sex, well, as a mother that’s something I don’t even want to think about. (But NOT because she has autism!)

8) “But, there is a test, isn’t there?: (Referring to my ability to have other, non-Autistic children, with the “help” of a prenatal test.)

No, there is not a definitive genetic test for autism. And, therefore, there is not fetal version of that test. And, even if there were, I would NOT have it done. I believe in the beauty of autism. I don’t think it deserves to be eradicated because of society’s misgivings over something they don’t want to understand, or accept. This rubs me the wrong way because obviously this person believes this to be a viable option (if it were available). Clearly they are of the thought process that terminating Mia in utero would have been completely reasonable on the grounds of her autism alone. Obviously, they think a life with autism is one not worth living – or caring for.

9) “Luckily, she doesn’t look disabled. That must make it easier.”

What? I still don’t even understand. Ohhh, I get it, because if she looked disabled then people would be rude and stare at us when we walked down the street? Oops. That’s right, they already do. People have no manners period. This statement just doesn’t even work. And it’s wrong because sometimes Mia’s disability is visible. (Refer back to question number three for reference.)

10) “It could be worse, she could have… (insert disability here.)”

This implies that I need their help putting my “troubles” into perspective. I don’t. I know I’m lucky. I’m very lucky to have such a beautiful, affectionate child who teaches me much about loving and living life. I’m beyond lucky to have a healthy, happy child. I realize this. Plus, it is a total put down to those who are diagnosed with the disability stated – I’m a big believer in the worth of ALL people.

11) (Upon learning my child has autism) “Oh my gosh, I’m so sorry.”

I respect that those who are saying this are desperately seeking out the correct words, and most likely they are very uncomfortable discussing autism with me, but this STILL bothers me. And, I think, for obvious reasons. She isn’t dying. She isn’t sick. She has autism. That’s all. Just a neurological variation; just a different way of being.

12) “You’re life must be so hard. I don’t know how you do it. You’re my hero.”

These statements always rub me the wrong way. I appreciate what they are trying to do here, but I promise you my life isn’t that much harder than your average mother’s. It’s just different. There are different struggles. I know the last part is supposed to be inspiring, but really, I’m your hero? For doing what any decent mother would do – loving, protecting, accepting, and nurturing my child? I don’t like being ennobled or sainted for doing something that comes naturally to me. (To all the people who have told me I am doing a great job, or that I am doing something special. I am NOT speaking to you. It’s mainly the first part of this statement that gets me.)

13) “I don’t think she is full blown Autistic.”

Functioning labels kind of suck. They misconstrue the very real struggles of people on the spectrum. Those who are labeled as “High Functioning” are often told their struggles are not as real as those on the “Low Functioning” end of the spectrum, while the latter are often looked upon as being less intellectually capable than the former. It’s really a lose/lose situation. This statement embodies these ideas. It’s ableist.

14) “Do you ever get to do normal things?” (Other variations include, “Can she do normal things?” and “What sort of normal things does she like to do?”)

What, because my child is not “normal”, I’m not ever able to do “normal” things? I shower, make dinner, go grocery shopping, pee, and bleed red blood, (and so does Mia – I know that’s surprising!) Aren’t all of these “normal” things?? I guess it’s just the use of the word “normal” within these questions that really gets to me. They wouldn’t be so bad if that one word was removed. It adds a whole other element to the question and implies that Mia is incapable of doing “typical” everyday things.

15) “So, she’s not fully retarded.”

Are they implying she is somewhat “retarded”? Because, no, she is not “retarded” at all. This causes offense for obvious reasons. Plus, I’m not a fan of what society has done with the word “retard(ed)” but that’s a whole other post entirely.

16) “G-d never gives you more than you can handle. He is trying to teach you patience.”

This one irritates me immensely. It insinuates that G-d give Mia autism to teach ME something. It means He gave Mia a life altering, neurological variation that causes very real struggles in her life in a bid to teach ME patience? How does that make any sense? Yes, I have learned things from her, but I’m not sure that I can support the idea that Mia’s struggles are all in the name of teaching ME.

17) “Did you do something during pregnancy to cause it?”

I’ve been asked this twice by two different women – one of which was pregnant herself. It’s my belief that I was asked this question in order to ease their own fears about their chances of having a child with autism. I think they were hoping I’d say yes so they could breathe easier. I find this offensive for obvious reasons.

18) “Is she violent?”

No. No. No. Autistic people are NOT inherently violent. And, studies actually show that Autistic people are much more likely to have a violent crime committed against them than the other way around. And, per capita, the average person commits more violent crimes than Autistics do.

19) “Is there a potential she will be fine someday? They are close to a cure right?”

Most people that say this don’t mean any harm. Most probably say it as some form of encouragement. But, it is nonetheless, a mentality that we do not share. To cure my daughter of her autism would be to fundamentally change who she is – not necessarily for the better either. Plus, has anyone ever taken the time to ask Mia if she would like to be cured? Most Autistics find this offensive, and rightfully so, because it is implying that there is something so wrong with them that they should need, or want, to be cured.

20) “At what age will she mentally stop growing?” (Other variations include, “So, she will be like a five year old her whole life.”)

This one is tough. I know the person that asked it was really just trying to understand autism, but it is still infanitilazation, and therefore, still offensive to me, and degrading to my daughter. What most people don’t understand about autism is that just because someone may need added support with an “easy” task does not mean they cannot do, on their own, tasks deemed intellectually hard. What I really mean is just because Mia is still potty training doesn’t mean that she is mentally at the age of a two year old. She’s actually on a higher reading level than most kids her own age!

 

IMG_20130518_192338

(Mia getting ready to blast off rockets – last weekend.)

 

*If you find a question on this list that you feel doesn’t deserve to be here, let me know why! I’m always open for discussion. Or, parents, if you have any statements to add, let me know I’d be happy to add them!

 

6 thoughts on “Twenty Things NEVER to Say..

  1. Saddened to say reading this I feel pain you and Roger having to hold back on what you would really like to answer!Love your blog…………….

  2. I am pretty horrified by all of these. Some are well intentioned ignorance (which we all are probably guilty of at some points in our lives) but others are just plain mean and….wrong. What the hell?

    I’ve got one to add from personal experience and I wonder if anyone has asked you this question (If you need further clarity on why I was asked this- email me): “Isn’t there a pill for that?”

    No, but I wish there was a pill for assh@les.

  3. I must admit that seeing some of Mia’s artwork, I did wonder if you helped her, because I know lots of parents help their kids…her artwork is very beautiful and looks as if a much older person did it! Again, I really wish I could buy some of it! XO

    • After re-reading what I wrote I guess I should have been more specific. I had one person say to me, verbatim, “She didn’t really do that by herself. Right?” Wondering, or asking nicely, is a completely normal response, BUT the tone in which this person used and their body language was the triggers that told me they didn’t believe it, no matter what my answer! 🙂

      Your question is perfectly reasonable! Theirs wasn’t just in the way they spoke the words. Love you!

  4. *jaw drops* this pisses me off. for a number of reasons… none of which i feel like ranting about though, and makes me sad too.

    to me just because Mia has autism does make her any different then any other child. in my eyes. yes i understand she has autism. maybe i am more accepting of it because of my bipolar and my sons adhd. who knows.

    i am sure i am guilty of offending you at one time or another and i feel bad about it but you probably educated me about whatever i said and made me look at things differently your good at that if you ask me thats the best part of your blog getting us (me) to look at the world differently.

    when i got pregnant with gilly they said because of my bipolar they recommended i get the baby tested for i think it was down syndrome? while in the womb. they said they would insert a needle in my belly into the baby and get some dna and test it. i dont get how they would know. but i declined the test.

    i was on my psyche meds while pregnant with him (though i stopped them all when i was pregnant with rosie) they also told me some of my meds could cause side effects like cleft palate but they maybe able to tell if he wasnt developing correctly through ultra sound. i felt like they wanted to add “encase you change your mind about the pregnancy” but they never did but i still feel like they wanted to add it.

    i love my kids fully as i feel all parents should regardless of whether they are “normal” or “special needs”. (i hate labels)

    i dont see my son any differently then i see my daughter. i do worry though that i may pass down my bipolar through genetics but it would never change my mind about bringing them into this world. they rock, they deserve life and to live it fully.

    sorry i rambled, a lot

    • Rose,
      I can’t ever remember a time when you have offended me and if I ever acted as such, or gave you that impression, I am sorry. Thank you for what you said about my blog – ultimately my goal is, through the teachings of Mia, to help people see the world and it’s inhabitants differently! A lofty goal indeed so it’s nice to know I have achieved it with at least one person!
      The test they wanted you to get done during your pregnancy with Gilly was called an amniocentesis. They are able to tell if the fetus has down syndrome by testing the amniotic fluid surrounding the it. People with Down Syndrome have an extra chromosome so it can be easily tested for.
      Implying that maybe you shouldn’t keep the child (when you were pregnant with Rosie) is ridiculous, but sadly, the same thing happened to me. Well sort of. Except the lady I was talking to, who happened to be a therapist of mine at the time, told me out right that she thought I should “get an abortion.” Obviously, we had no idea Mia had autism so it had nothing to do with that but more to do with the life I was leading at that point in time. I know I was not in the best position to have a child BUT I don’t think anyone can ever really be ready for the immense changes parenthood brings to life. Plus, it does not matter what I had done she had no right to say that to me, and more than once too! I was highly offended by her remarks and, frankly, still am. So I understand your anger there.

      Love ya! xoxo

      P.S. – You do NOT have to apologize for “rambling”. That is what the comment section on my blog is all about, commenting. 🙂

Comments are closed.