Things you should and should not say to autism parents -

[rafiki]

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[lmrich]

Awesome. Thanks for posting.

[DawnM]

My old college roommate just told me, "Oh, your son has Asperger's? I have it too. I took two online tests." :glare::glare::glare:

[freeindeed]

Thanks for posting this. I plan to share it on my FB wall.

[Dandelion]

Thanks for sharing!

 

One of the most annoying comments I ever got when I shared DS's diagnosis with someone was: "Oh, you poor thing - how awful!". And this person just went on and on like that, even though I tried to assure her that I don't feel "awful" about DS's autism. Understanding and caring are good - pity, IMO, is unwelcome.

[Ibbygirl]

:) Those are great! I'll add to the things you shouldn't say list, "He must get it from your side of the family." :glare:

[Ibbygirl]

My old college roommate just told me, "Oh, your son has Asperger's? I have it too. I took two online tests." :glare::glare::glare:

 

LOL I love this one too, "Your kids have Autism? You just need to get this certain dog and it will cure them." :glare:

[LillyMama]

Can this be X-Posted to the General Forum? I personally would like to know more and think others who don't frequent the SN could probably also benefit. But I'm new enough so I don't know the rules or culture that well...

[merry gardens]

I probably need to go apologize to some people. May I ask politely why the "should not say" list included the comment, "My child does that sometimes too?"

 

Some of the behaviors typical of autism can be found in other children in lesser degrees. The person saying "My child does that too" might have a child who has something going on, even if it's not full-blown autism.

[wy_kid_wrangler04]

My old college roommate just told me, "Oh, your son has Asperger's? I have it too. I took two online tests." :glare::glare::glare:

 

 

I have had so many people say that to me. So irritating. (they have said it with autism and aspergers-- ds has HFA though) Its like they act like Autism is some cool fad or something :glare:

[rafiki]

.

[Ibbygirl]

I probably need to go apologize to some people. May I ask politely why the "should not say" list included the comment, "My child does that sometimes too?"

 

Some of the behaviors typical of autism can be found in other children in lesser degrees. The person saying "My child does that too" might have a child who has something going on, even if it's not full-blown autism.

 

I can't answer for the lady who wrote the list, but I'm guessing it bothered her (or whoever contributed that particular one) because by a person saying that their "typical child" does that too, it may in her mind seem like a minimization of the struggle of what she is dealing with with a full blown Autistic child.

 

There were several on the list that didn't really bother me (or wouldn't if I had heard them said to me), but some of the more callous ones I've definitely heard and have been hurt by.

 

This particular one wouldn't bother me though. HTH. :)

Edited May 30, 2012 by Ibbygirl

[wy_kid_wrangler04]

I probably need to go apologize to some people. May I ask politely why the "should not say" list included the comment, "My child does that sometimes too?"

 

Some of the behaviors typical of autism can be found in other children in lesser degrees. The person saying "My child does that too" might have a child who has something going on, even if it's not full-blown autism.

 

 

 

I can only speak from my experiences but the few times it has been said to me (1 person says it alot-- this is specifically who I am talking about right now) she says it in a way so there is an assumption that I am blaming the autism for his behaviors and I should be able to get a better hold on his behaviors. That I would rather blame his autism instead of work on the problem behaviors, which is NOT the case at all. You can work and work and work with an autistic child on something and they just do not get it. The connection is not there, while her neurotypical child can be told once or twice and the behaviors start improving. Does that make sense?? Like I said, this is specifically about 1 family that says that to me all the time so I am not at all saying that is how it comes across when you say it :001_smile:

[Critterfixer]

My personal least-appreciated one wasn't on the list, but I've heard it even from well-meaning family members.

 

"Maybe you should put him in public school." I suspect they are thinking about the social skills part that autistic individuals struggle with. But every time I have to bite my tongue before I say something like, "Oh, like swimming? Just throw him in the pool with his hands tied behind his back?"

[Ibbygirl]

My personal least-appreciated one wasn't on the list, but I've heard it even from well-meaning family members.

 

"Maybe you should put him in public school." I suspect they are thinking about the social skills part that autistic individuals struggle with. But every time I have to bite my tongue before I say something like, "Oh, like swimming? Just throw him in the pool with his hands tied behind his back?"

 

:grouphug::grouphug::grouphug: My Aspie dd was in public school for 3rd grade. It was a living nightmare. She was bullied mercilessly and beat up several times. Yeah, PS has a great socialization program... NOT!! :glare:

[wy_kid_wrangler04]

My personal least-appreciated one wasn't on the list, but I've heard it even from well-meaning family members.

 

"Maybe you should put him in public school." I suspect they are thinking about the social skills part that autistic individuals struggle with. But every time I have to bite my tongue before I say something like, "Oh, like swimming? Just throw him in the pool with his hands tied behind his back?"

 

 

 

I have had that comment to. I used to take it personally, like they were saying he was behind because of me, but I don't anymore. I know they (mostly) have good intentions.

[merry gardens]

I can't answer for the lady who wrote the list, but I'm guessing it bothered her (or whoever contributed that particular one) because by a person saying that their "typical child" does that too, it may in her mind seem like a minimization of the struggle of what she is dealing with with a full blown Autistic child.

 

There were several on the list that didn't really bother me (or wouldn't if I had heard them said to me), but some of the more callous ones I've definitely heard and have been hurt by.

 

This particular one wouldn't bother me though. HTH. :)

 

I can only speak from my experiences but the few times it has been said to me (1 person says it alot-- this is specifically who I am talking about right now) she says it in a way so there is an assumption that I am blaming the autism for his behaviors and I should be able to get a better hold on his behaviors. That I would rather blame his autism instead of work on the problem behaviors, which is NOT the case at all. You can work and work and work with an autistic child on something and they just do not get it. The connection is not there, while her neurotypical child can be told once or twice and the behaviors start improving. Does that make sense?? Like I said, this is specifically about 1 family that says that to me all the time so I am not at all saying that is how it comes across when you say it :001_smile:

Thanks. That makes sense that the delivery and meaning behind the words may be what's offensive rather than the actual words.:)

[Critterfixer]

I have had that comment to. I used to take it personally, like they were saying he was behind because of me, but I don't anymore. I know they (mostly) have good intentions.

 

I know that too. Which is why my tongue gets bit before I can injure myself and the well-intentioned person.

[nitascool]

I had an autism psychiatrist tell me when ds was six, "He's not autistic, he just needs an old fashion spanking." Her exact words.

 

Some other hurtful comments we've heard have been;

"He doesn't belong with 'normal' kids."

"What's wrong with him? Is he stupid?" Yes an adult asked me in front of my son if my son was stupid.

"He's too old to whine like that. Can't you teach him to 'man-up'."

"I don't care if he's autistic and didn't understand the rules he can't have a second turn." (This by the same person who gave a typical 6yo a second turn because she was just little).

"You're lying, autistic kids are retarded and your kid is smart."

[Ibbygirl]

I had an autism psychiatrist tell me when ds was six, "He's not autistic, he just needs an old fashion spanking." Her exact words.

 

Some other hurtful comments we've heard have been;

"He doesn't belong with 'normal' kids."

"What's wrong with him? Is he stupid?" Yes an adult asked me in front of my son if my son was stupid.

"He's too old to whine like that. Can't you teach him to 'man-up'."

"I don't care if he's autistic and didn't understand the rules he can't have a second turn." (This by the same person who gave a typical 6yo a second turn because she was just little).

"You're lying, autistic kids are retarded and your kid is smart."

 

Wow!! :eek: :svengo: Those are horrible, but that last one takes the cake. :grouphug::grouphug::grouphug: It boggles the mind that there are people who think it is okay to go around saying these things!!

 

I hate the "R" word so much or short bus jokes. My profoundly Autistic son is the bravest, sweetest and purest soul I have ever met in my entire life. People could learn a thing or two from him and the other kids on the short bus. :glare:

[LillyMama]

Can I ask a question, trying to be as respectful as I know?

 

My sis has a master's in spec ed and she always says "We're all on the spectrum somewhere." My OT friend will likewise say "Everyone has sensory issues, we could all benefit from therapy." These are the two MOST LOVING people I know who have dedicated their lives to loving and supporting those whose situation they have a passion for. They're not callous AT ALL.

 

I think the intent of these statements is to say. "Hey, I'm not judging you, we can all give each other some grace as there really is no 'normal.'" But after reading the list, I'm wondering how that is heard by parents of kids whose children have been diagnosed with autism? Do you hear it as if the speaker thinks you're pretending things are harder than they are for you? I've never actually said either of those things, to parents of kids with autism or SPD, but I've thought it as a way that could show that I don't see their kids as "broken." I'm wondering if it's something I should erase from my mental list?

 

Thanks.

[dkpalaska]

Those are great - thank you for posting. I liked the "should say" list in particular.

 

:grouphug: :grouphug: :grouphug: to everyone for all those things we've heard/seen that have hurt, even from well-meaning friends. Sometimes the omission of offering aid and/or understanding is as painful as the forthright obnoxious comment...

 

Forgiveness and resilience are virtues that we all get to practice rather often, aren't they?:tongue_smilie:

[dkpalaska]

My sis has a master's in spec ed and she always says "We're all on the spectrum somewhere." My OT friend will likewise say "Everyone has sensory issues, we could all benefit from therapy." These are the two MOST LOVING people I know who have dedicated their lives to loving and supporting those whose situation they have a passion for. They're not callous AT ALL.

 

Not everyone will take every comment the same way, and much depends on how well the people involved know each other. You could read through the "shouldn't say" list and come away thinking, "Geez, these parents are SO SENSITIVE." :001_smile:

 

I guess from my perspective, I always try to take comments as well-meant, unless there's glaring evidence to the contrary. As someone making the comments who doesn't have an autistic child, I would say: try to err on the side of safety if you don't know the parent well and have a good feel for how they'll take it. For sure, I don't think ANY comment from the "should say" list would be taken wrong, unless the parent is having a gigantically bad day.

 

And thank you, for being compassionate and wanting to be helpful! It means so much.

[AmyinMD]

My biggest pet peeve comment so far is people that compare Autism to late talking. It seems like everyone knows of a family member or friend that didn't talk at all until the age of 3-4. I don't think they understand that while lack of speech is a huge issue for ds he has so many other things going on. He does not engage in nonverbal communication either like eye contact, head nodding, and gesturing. I think it is generally said like they assume that my son will just wake up and start talking in sentences one day. He does try to talk but it comes out all garbled and no one can understand him. I sure wouldn't try to talk much either if I were him. While we may be able to get functional speech from him it is going to take hundreds if not thousands of hours of therapy to get there.

[wy_kid_wrangler04]

I had an autism psychiatrist tell me when ds was six, "He's not autistic, he just needs an old fashion spanking." Her exact words.

 

Some other hurtful comments we've heard have been;

"He doesn't belong with 'normal' kids."

"What's wrong with him? Is he stupid?" Yes an adult asked me in front of my son if my son was stupid.

"He's too old to whine like that. Can't you teach him to 'man-up'."

"I don't care if he's autistic and didn't understand the rules he can't have a second turn." (This by the same person who gave a typical 6yo a second turn because she was just little).

"You're lying, autistic kids are retarded and your kid is smart."

 

 

I have had a similar comment to the "man up" comment before. Just so frustrating! :grouphug:

[TippyCanoe]

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[Critterfixer]

I think you're right about the intent of the comment. But as with the "My kid does that too," it tends to trivialize the enormous gulf between a neurotypical person's occasional issue -- say, feeling uncomfortable in large parties meeting people for the first time -- with the constant stress, anxiety, effort, and exhaustion required for these kids to navigate even a couple of hours of everyday life.

 

 

 

:iagree:

[Ibbygirl]

I think you're right about the intent of the comment. But as with the "My kid does that too," it tends to trivialize the enormous gulf between a neurotypical person's occasional issue -- say, feeling uncomfortable in large parties meeting people for the first time -- with the constant stress, anxiety, effort, and exhaustion required for these kids to navigate even a couple of hours of everyday life.

 

:iagree::iagree: This. You said it so much better than I ever could.

 

When you as a parent first find out that something is wrong with your child and that that thing has no cure and it will affect them for the rest of their lives, something in your heart just dies. And yes it does make you sensitive and protective of your child. It is so extremely painful to see your beautiful child that you love with all your heart struggle with things that typical people don't even think twice about. My son is 11 and still doesn't say "mama" He hardly says anything for that matter. He has severe sensory issues that effect every single area of his life. He is just now finally potty trained. He is behind in every single way. To say, "we're all on the spectrum somewhere." or "we all have issues." Is just not on the same scale. My son has no friends and probably never will. He will never fall in love and get married some day. He will never have children of his own. He cannot take care of himself. He cannot express himself or even communicate enough to tell me the most basic things. It's just not the same level as "we all have issues."

 

I'm all for common ground and understanding, but it's comparing apples to oranges to compare a typical functioning child with a profoundly Autistic one. They are nowhere near operating at the same level.

 

Hope that helps to shed some light and understanding on the matter.:)

Edited May 30, 2012 by Ibbygirl

[TippyCanoe]

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[Ibbygirl]

:grouphug::grouphug::grouphug:

 

My nephew has a tear in one of his chromosomes. He's eleven, and is nonverbal, suffers terribly from digestive issues and vomiting, has a minimally functioning immune system so is sick ALL THE TIME, can walk holding someone's hand but not independently, has visual impairments and is partly deaf, has deformed fingers and inner ears. His short life has been so terribly hard; he's in pain a lot of the time. He's had several surgeries and will face more.

 

If someone were to say, "Oh, yes, but none of us is physically perfect, we all have our little imperfections and aches and pains," how would we react to THAT?

 

Exactly. It's just not possible to compare with a typical person's experience. Unless a person is walking through it or close to someone who is, you just cannot truly understand the level of difficulty that just daily life takes.

 

Hugs to you and your precious nephew. :grouphug::grouphug::grouphug::grouphug: Ugh, that is so hard. :crying:

 

That's why I get so upset when people ridicule and make fun of people living in special circumstances. They have no idea the amount of bravery and fortitude it takes to just live in the world each day. They are truly the bravest souls and usually the purest as well.

[mommymilkies]

I do not have a child with ASD, but I used to work in Sp Ed with children with severe/profound autism (and other disorders including behavioral). I have had some of the worst comments from educational personnel. If they ask where I worked, I have had many say "OH! I'm soooo sorry! Those kids are quite difficult." in this horrified tone. It really takes me aback. I wanted to work with them. I wish I had that job back-it was wonderful and the kids were great. You would think working in education that they would care a little more.

[MamaSheep]

People do sometimes say pretty ignorant things about kids with autism. Most of the time, though, I don't think they intend to be hurtful. I've found over the years that the better reaction for me as a mom is to be understanding about other people's deficit of knowledge about autism, just like I want them to understand that my child has social deficits (and other challenges). I try to be as patient and kind about their awkward, and even offensive, remarks and actions as I would like them to be about any awkward or offensive thing my child might inadvertently say or do. Not only does honey catch more flies (to toss in a blatant non-literal usage), but it also models for them the behavior I would like to see from them, and quite often I find that they mirror my behavior subconsciously, which is at the very least a good start in the right direction. I really find that most people I meet genuinely want to understand and be supportive but just don't quite know how--kind of like sometimes our kids want to interact appropriately with neurotypical types but aren't quite sure what to do. I have never found that being easily offended by things like the statements on the list ever helped my child, but being able to smile and gently offer another point of view has gained me many supportive friends and neighbors that I could easily have alienated if I had become hostile and resentful at their first awkward approach. Yes, there are some people who are just willfully ignorant and refuse to learn anything new or change their behavior in any way, but I'd rather be a little too kind to someone who doesn't deserve it than to scare off someone who might become a staunch defender later on, with a little more education and experience. I need all the help I can get. And if I want to go around asking people to be kinder, I kind of think that doing it in a hostile, resentful, unfriendly manner would probably be counterproductive to my goal.

[Ibbygirl]

People do sometimes say pretty ignorant things about kids with autism. Most of the time, though, I don't think they intend to be hurtful. I've found over the years that the better reaction for me as a mom is to be understanding about other people's deficit of knowledge about autism, just like I want them to understand that my child has social deficits (and other challenges). I try to be as patient and kind about their awkward, and even offensive, remarks and actions as I would like them to be about any awkward or offensive thing my child might inadvertently say or do. Not only does honey catch more flies (to toss in a blatant non-literal usage), but it also models for them the behavior I would like to see from them, and quite often I find that they mirror my behavior subconsciously, which is at the very least a good start in the right direction. I really find that most people I meet genuinely want to understand and be supportive but just don't quite know how--kind of like sometimes our kids want to interact appropriately with neurotypical types but aren't quite sure what to do. I have never found that being easily offended by things like the statements on the list ever helped my child, but being able to smile and gently offer another point of view has gained me many supportive friends and neighbors that I could easily have alienated if I had become hostile and resentful at their first awkward approach. Yes, there are some people who are just willfully ignorant and refuse to learn anything new or change their behavior in any way, but I'd rather be a little too kind to someone who doesn't deserve it than to scare off someone who might become a staunch defender later on, with a little more education and experience. I need all the help I can get. And if I want to go around asking people to be kinder, I kind of think that doing it in a hostile, resentful, unfriendly manner would probably be counterproductive to my goal.

 

 

:iagree::iagree: Very well said Amy. :) I think every parent or person close to someone with disabilities becomes a kind of spokesperson for that disability in some ways. I know I've had many conversations in checkout lines where someone said something about my child's behavior and I explained to them that they have Autism and that they really cannot control what they are doing. Many times they wind up asking me questions and hopefully leave with a little more understanding. :)

[Maverick_Mom]

My personal least-appreciated one wasn't on the list, but I've heard it even from well-meaning family members.

 

"Maybe you should put him in public school." I suspect they are thinking about the social skills part that autistic individuals struggle with. But every time I have to bite my tongue before I say something like, "Oh, like swimming? Just throw him in the pool with his hands tied behind his back?"

 

I heard that one, too. Actually, it came in the form of a question, with the questioner's eyebrows somewhere up around her hairline and her mouth open in stunned disbelief: "Why in the world are you homeschooling him when he needs to be in school for the socialization?!" And the irony was that he HAD been in ps for a year after he was diagnosed, but we brought him home because he was so unhappy in school. Not sure how that was even possible with all that great socialization going on, but what do I know? -- I'm just his mom. ;)

[Guest]

nm

Edited May 31, 2012 by Guest

[LillyMama]

So to say "We're all a little bit like this, we're not so different," is, from the point of view of a husband and a dd on the spectrum, a HUGE lack of comprehension about the enormity of the issues these kids face, and a lack of understanding of the toll it takes on them to be stressed out and trying to figure things out year after year.

 

I truly appreciate the kindness of the intent behind the comment, but I find it equally problematic in the gap between their work with spectrum kids for a few hours each day and the 24-hour-a-day, 365-days-a-year that kids and parents must deal with.

 

Thank you. Thank you for your patience with me, as I'm sure even reading what I typed could have raised your blood pressure. I think I understand much better now about how those phrases can be heard.

 

And, just because I feel like I've maligned her character :D, my sister has only ever said those things to me in our personal conversations about my kids. My son had some of the things people have spoken about in other posts- delayed speech, rocking while reading, toe walking, etc- so when he was young she gave me lots of tips that she learned as an inclusion advocate, teacher and respite volunteer. She would never claim that her experience gives her any true understanding for what parents go through, as you said, 365 days, 24 hours. And I feel bad that my post insinuated that she might feel that way. But when I was struggling to understand the hoops the peds and OTs were having us hop through, and getting frustrated as to why no one wanted to diagnose my kid with anything but wanted me to take him to all sorts of therapies, she was just telling me to do what I needed to do.

 

Anyhow, thanks, I really really appreciate this thread and all of your willingness to be open and vulnerable. It's not easy talking about ourselves and I can only imagine how it must feel to have these conversations about your children. For those of us not in your shoes, these are ideas. But for you- it's a reality. You don't close this thread and move onto something else, you close this thread and go live it. And I do truly want to be sensitive to that.

[DawnM]

When my son was 4 or 5 we took him in and I mentioned Asperger's. The psychiatrist literally looked at me and said, "Oh, you don't want it to be that, let's see what else it could be!"

 

That is a huge reason it took until NOW to get a real diagnosis!

 

ARGH!

 

Dawn

 

I had an autism psychiatrist tell me when ds was six, "He's not autistic, he just needs an old fashion spanking." Her exact words.

 

Some other hurtful comments we've heard have been;

"He doesn't belong with 'normal' kids."

"What's wrong with him? Is he stupid?" Yes an adult asked me in front of my son if my son was stupid.

"He's too old to whine like that. Can't you teach him to 'man-up'."

"I don't care if he's autistic and didn't understand the rules he can't have a second turn." (This by the same person who gave a typical 6yo a second turn because she was just little).

"You're lying, autistic kids are retarded and your kid is smart."

Edited May 31, 2012 by DawnM

[TippyCanoe]

.

[TippyCanoe]

.

[LillyMama]

I wasn't even thinking of your sister when I wrote what I did -- I'm sorry if I made you think I was aiming that at her! What I actually had in mind was a (former) friend who would say things like this with this casual smile on her face, as if her dd's wanting to eat peanut butter sandwiches every day for lunch was the same thing as a kid who literally, for a number of years, could not feel the food in her mouth (or running out of it) and so tolerated/was able to chew only a limited number of foods. I was also thinking of my brother, who doesn't believe there's anything at issue with dd, I'm just overprotective, all kids do weird things, etc. My life, nothing you said or did.

 

Oh, you didn't say anything wrong. I just feel bad when I talk about people. ;)

 

You know, my kids both have severe nut allergies. As in, give my son something made in a facility with tree nuts and we'll be in the ER in 20 minutes, praying he breathes again. Yet we frequently get the eye rolls, told we should let him eat with his soccer team and "not make him a weirdo," and the blatant lies about whether people put nuts in things. One of his grandmothers is notorious about this. His own grandmother!

 

I'm not trying to compare living with autism to living with nut allergies. But I think I have a better understanding of what you are trying to get across you talk about feeling isolated, misunderstood, judged and preached at. And I only have to deal with it with food. So you've given me a glimpse of the fact that what I deal with infrequently in a small area in our lives is magnified for others, in every aspect of their lives. I hope you hear that I'm not trying to say "Me, too, me too!!" but instead that I'm trying to find some sort of reference for me to get a grasp. Not to find exact matches, but a way for me to process so I can be more careful with my words.

 

And if you're wondering why I'm acting so obsessed- one of my closest friends just had her second son diagnosed. So I'm practicing on you all so I don't add to her stress.

 

Thanks again!

[TippyCanoe]

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[Ibbygirl]

And if you're wondering why I'm acting so obsessed- one of my closest friends just had her second son diagnosed. So I'm practicing on you all so I don't add to her stress.

 

Thanks again!

 

What a sweetheart you are!! I'm sure you couldn't offend anyone if you tried! :grouphug::grouphug::grouphug:

Your close friend is lucky to have such a thoughtful and honest person as you are! The world would be a different place for our kids if there were more people like you.

 

:iagree::iagree:

[MamaSheep]

Wow, you are a better person than I am! I would LIKE to be this way, and sometimes I do manage it. But after a while I get tired of having to always be a one-woman societal educational front; I don't want to always have to explain my dd to everyone who feels called to comment on her in public. When things are particularly grim, I'm completely incapable of that detached, gentle, kind explanation, and frankly, I just become incensed that some people feel free to make my bad moments worse with their ignorant remarks. Then I have to deal with dd's reaction to them as well. She's not deaf; she's not uncomprehending; she's a person with feelings -- far more innocent and truly good feelings than many a person who thinks it's fine to talk about her derogatorily right in front of her. There are times when my best consolation is a wonderfully rich fantasy life in which (among other things) I smack these people across their smug little faces.

 

However, I do honestly admire and applaud you for your stance.

 

I've had a lot of practice. Also, did you notice my use of the word "try", and the fact that I've reacted in other, less admirable ways enough times that I have a frame of reference to know which of my possible reactions gets the better result...lol. Actually, I think a lot of the time when I'm calm under stress, both with other people and with my own kids, it's more because I am so emotionally depleted that I refuse to use what little emotional resources I have left getting worked up over something stupid than anything else. But yeah, there are also those days when the stress has reached the flash point and someone innocently blunders in and lights the fuse. Sigh. But I still say patience and understanding get the better result. And as I say, there seem to be lots of opportunities to practice (although not as much as the years go by in the same neighborhood, because I've indoctrinated enough people by now that they're starting to explain it to each other and leave me alone).

 

 

(And I too enjoy a rich fantasy life full of mischief and mayhem...hee heee....)

[pdalley]

I actually had a mother of another child with autism demand to know why I had three children when the first one was autistic.

 

I rather frostily explained that we didn't know that the oldest was on the spectrum until after we'd had youngest and were 'done' before we knew it. Then I further more explained that in OUR family autism was genetic and we really probably couldn't have anything but more people on the spectrum.

 

Her son was high functioning just like my three are.

 

But hands down the worst thing was my mother sneering at me that I really couldn't expect them to be functioning, independent adults. I do actually. That's my life's goal, actually. Which she knew. I couldn't respond to her because she said it while in the hospital for radiation treatments for cancer. No, it wasn't due to the radiation - she often said things like this way before the cancer.

 

So what random people say usually goes in one ear and out the other. I quite frankly don't know what I'd do with a 'typical' kid because I'm quirky myself. I understand myself so much better because of my kids.

[Walking-Iris]

Some of these are from my own experiences with my ds:

 

"oh well he doesn't look like he has autism. so that's good"

 

"but he's always so polite, he couldn't have autism"

 

sudden quiet voice: "oh really" then looking at him as if they're expecting a second head to sprout any minute or they expect him to be on his death bed.

 

I had a long talk with out OT because whenever we would talk about things we were dealing with she would say things like "well that's pretty common with...you know...these kids" as if saying the word was some sort of curse word. I asked her to just say autism or PDD or kids on the spectrum because it wasn't going to bother me or him in the least.

 

Two of my biggest pet peeves though---and they happen to me pretty often:

 

"doesn't seem like anything my kid doesn't do" or "oh I know my kid does the same thing" when they have NT kids and it's said in a dismissing sort of way.

 

Also the "well you must be a pretty special person to have a kid with autism, I don't think I could do it." I get what they mean but that one pisses me off every time.

 

I also don't like the "ignorant experts" as I call them. "Well I've read that vaccines/gluten/allergies/environmental toxins/ fill in the blank don't really/or do have such and such effect on whatever."

 

Everyone who does not have a kid on the spectrum seems to be a Jenny McCarthy or an anti-Jenny McCarthy if you know what I mean. I think it's offensive. I wish people would give us the benefit of the doubt that we do try to learn as much about it as possible and that not all things help or effect kids on the spectrum in the same ways.

 

And this bothers me as well. An acquaintance I know who put a blue light on her porch and displays puzzle pieces but has no qualms about spraying and dusting her yard with large quantities of weed killer and Sevin-Dust. "people are born with problems, they wouldn't sell stuff that could cause developmental problems."

Edited May 31, 2012 by Walking-Iris

[Cortana]

Its like they act like Autism is some cool fad or something :glare:

Yup. I was discussing curriculum with another mom and it came up that ds#2 has HFA and she pipes up "oh, I'm sure my oldest son must have Asperger's or something cause he's so good at music and just picks up an instrument and becomes extremely good at it. He's become obsessed with playing all kinds of instruments. And he's really good at math, too." Keep in mind that she said all this with an excited, giddy voice and was practically jumping up and down. :001_huh:

[Shelly in VA]

Great lists; thanks for posting! I need to try to incorporate the "should say" items into my conversations with people. As opposed to what I do now, which is to either withdraw and act like the comments don't bother me, or to snap something sarcastic. For instance, last week a neighbor went on and on to me about how my 6yo (diagnosed on the spectrum 2 years ago) has really mastered the art of "acting like" he doesn't hear people speaking to him. The neighbor, who, incidentally, KNOWS about the diagnosis, wouldn't drop it. He kept saying things like, "You know, I don't mean like normal kids, who do it a little, I mean he REALLY tunes out and doesn't even look at you, it's got to be so frustrating to deal with that all the time when, really, he just needs to be told more often what you expect." I finally snapped and said, "Yes, to think of the time and money we have spent getting his autism diagnosis and therapy, when all I really needed was someone to tell me what a brat he can be." Not the best reaction on my part, to say the least. :blushing: Sigh.

 

Another good one on the list is, "Are you sure he has autism? He seems fine to me." I think people say that in an effort to be supportive, but it really isn't, b/c it dismisses what you are dealing with. It also implies that if your child is on the spectrum, he/she would be constantly out of control. And it reinforces what I dealt with for a long time, which was thinking that the problem wasn't with my son, but rather with my parenting or something external that I was failing to notice. It's very easy to second-guess yourself as the parent of an autistic child, even after the diagnosis, and comments like this one bring all of that right back to the surface. Also, how are you supposed to respond? You certainly don't want to reply by listing all the recent meltdowns and issues you have handled, thus turning the mental image of your child into the 24/7/365 terror people expect! Hope that makes sense.

 

Anyway - thank you for the post!

[Walking-Iris]

Yup. I was discussing curriculum with another mom and it came up that ds#2 has HFA and she pipes up "oh, I'm sure my oldest son must have Asperger's or something cause he's so good at music and just picks up an instrument and becomes extremely good at it. He's become obsessed with playing all kinds of instruments. And he's really good at math, too." Keep in mind that she said all this with an excited, giddy voice and was practically jumping up and down. :001_huh:

 

:iagree::iagree::iagree: My ds doesn't have Aspergers but I haven't failed to note the sudden increase in the thinking it must be some cool club that others need to scramble to get into.

[MomatHWTK]

Ah... we have the severe food allergies and the serious behavioral problems. (Doctor is not willing to dx Aspergers yet). Frustrating all around absolutely.

[Shelly in VA]

Yup. I was discussing curriculum with another mom and it came up that ds#2 has HFA and she pipes up "oh, I'm sure my oldest son must have Asperger's or something cause he's so good at music and just picks up an instrument and becomes extremely good at it. He's become obsessed with playing all kinds of instruments. And he's really good at math, too." Keep in mind that she said all this with an excited, giddy voice and was practically jumping up and down. :001_huh:

 

This does seem to happen quite a bit. Almost as if it's fun, and aren't-you-lucky-to-have-a-child-with-such-gifts! My parents do this to me more than anyone I know. :glare: They pay so little attention, though, that sometimes I get, "I met a boy who must be on the spectrum, b/c he is just really good at math, and he's so adorable," followed by, "Have you considered where your son will live as an adult?" [um, yes, in a house or apartment somewhere...] and, recently, "Oh, look, is this one of those 'meltdowns' I've read about?" following a very mild incident where ds cried b/c I wouldn't buy him a toy in a gift shop [um, no, not a meltdown, just a 6yo temper tantrum]. But the trendy, fun, we-might-be-on-the-spectrum response is really annoying. B/c as much as I love my ds, and as much as I sometimes truly enjoy him, getting to this point has NOT been exciting, giddy, or fun.