To The People Who Think My Son Doesnt Look Like He Has ASD

[mack]

We forget that autism is a spectrum -- a wide spectrum of incredible people with varying gifts, interests, looks, and struggles.

I don't think I could relate more to this if I tried.


www.huffingtonpost.com/lauren-casper/to-the-people-who-think-my-son-doesnt-look-like-he-has-autism_b_6760886.html


"He doesn't look like he has autism."



"But he seems so normal."



"Oh, my kid does that, too."



Trying to advocate for my son while also attempting to raise autism awareness can be a tricky business, because my personal experience with autism is limited to one person... Mareto. Yes, I know other children with autism (which wasn't the case a few years ago), but I don't know them or have experience with them in the same way I do with my son. So, when I share about autism and parenting a child with autism, it is from my perspective as Mareto's mommy. And sharing can be frustrating, because often, I get responses like the comments above.



What do you say to someone who doesn't think your child looks autistic? Does autism have a look? Yes, I suppose it does. It looks like beautiful brown eyes that sparkle in the light. It looks like a wide smile and a face that lights up with joy over the sight of a train. It also can look frightened and confused and bothered by loud noises. Autism can look like blue eyes or green eyes, blonde hair or black hair or brown hair or red hair. Autism can look like eyes that never quite meet your gaze, or eyes that have learned to make contact except when overwhelmed or frightened. Autism can look like diapers at 5 or potty trained by 3. Autism can look like flapping and spinning or sitting quietly with an iPad. Have you caught on yet? There is no one look to autism.



Did my son seem "normal" to you in the 10 minutes you spent with him? Well, that's nice, because he is normal... he's a sweet, normal, beautiful boy with autism. If you're trying to tell me that you didn't notice any signs of autism in your limited experience with him, that's OK, too. Please keep in mind that Mareto has good days and bad days, and sometimes he has good hours and bad hours. But if what you're really trying to tell me is that you don't think he has autism, then please consider how hurtful that might be to us, his parents. Please consider how that might invalidate all our efforts, all our battles and all our triumphs. What you are really implying is that we've wasted all of our time for the last 2 1/2 years because he's just "normal."



Or what about the little girl down the street? The one who doesn't look or act like my Mareto? Her parents are concerned and have been referred to a specialist to evaluate her for ASD (Autism Spectrum Disorder). But she couldn't have autism, because she's so very different from my son, you say. She doesn't share the same struggles or act the same way. She eats just fine, and maybe she's even potty trained. She has her own list of "quirks," and maybe it's something... but surely, not autism. In comparing her to Mareto, we make a common mistake: We forget that autism is a spectrum -- a wide spectrum of incredible people with varying gifts, interests, looks, and struggles.



There is no one look to autism, and there is no one face of autism. My friend's son loves fruit, but my son is repelled by it. They both have autism. Her son is a blue-eyed, blonde-haired little boy, and mine is a brown-eyed, brown-skinned little boy. They both have autism. Sometimes my son makes eye contact, and other times he really struggles to meet my gaze. He still has autism in each moment. Sometimes, my son will play enthusiastically with other children, and other times, he hides in the pantry to escape all the noise and interaction. He still has autism in each scenario.



My son is not the face of autism... but he is one of the many beautiful faces of autism.



This post originally appeared on laurencasper.com. You also find Lauren on Facebook, Instagram, and Twitter.

[NiteStar73]

One of my personal faves:

"Oh but he's so cute!"

I think we just need to continue trying to raise awareness so others know that there are many different 'flavors' of ASD and in many cases it's "invisible".

[typeset]

"I don't see it."

Lucky you.

[KC thepouchh8r]

Dd is a very sweet, soft spoken rule follower (to a flaw-I literally cannot break her of the habit of holding hands while walking even though she's moved past the stage of running off years ago). Last year ds played tball and we went to all the games. Most of the other kids around her age would be running around but she'd just sit next to me on the bleachers quietly. A grandma sitting in front of me started talking to me, saying she was cute and asking how old she was. She starting saying how lucky I was she was so well behaved and she had grandchildren that age that couldn't come because they'd be darting towards the road. I explained she was acting like this because she had autism. Her mouth dropped.

Comparatively we had to go to the pharmacy to get a script for ds last week. I can't figure it out for the life of me what it is about this place but she cannot handle it, pushes her hands over her eyes and screams. I would say it's the lighting but she does fine in doctors offices, grocery stores and malls with similar lighting. We waited for 15 minutes while she waited lying on the ground whining while holding her eyes. I had zero motivation to explain to the various customers/staff giving me weird looks. I'm sure they either figured it out or just thought I was a shittastic parent.

I feel more apt to explain when she's presenting with the non stereotypical behavior vs the obvious ones.

[mack]

Also "she's so friendly."

[mack]

Or "but she makes eye contact."

Actually, she's looking at your cheek.

[mrsbuttinski]

Nice post. She kind of skips over the notion that many who have not been in her shoes don't see ASD because they are trying to be supportive and even validate the work her child's team may have done with him. Sometimes a loving grandmother or family friend is coming from a place of genuinely not seeing a difference.

That said, I do think there's a look for some on spectrum that reveals with age.

Total anecdote here, but I have noticed that it's somewhat common for kids with ASD to be unusually attractive as younger kids. Some studies suggest it is related to an unusual degree of facial symmetry. I've heard others suggest it might be related to people being hardwired to find the face of a sleeping child appealing; kids on spectrum often have the same flatter facial affect as those who sleep. Often parents don't see this in their own child. DS had one classmate whose mom describes him as "animated"; sorry lady, my talking Barbie has a better range of emotions in her voice and on her face. Though he is a sweet kid and warms up over time.

I have a few friends I've met through an old support group specifically for Aspergers. These were some of the cutest kids imaginable at 5 and 7- gorgeous really. As young adults and teenagers, their faces have changed. Their features are more crowded, the way they hold their faces is less typical. Perhaps because they've become more guarded over time but they look less typical now than they did. It's a subtle thing. I suspect many might guess they're a little different based on that alone.

It's funny. DS was an average looking kid, but his looks have changed, too. There have been a few times when he has been mistaken for another scout we know on spectrum. These boys have little in common- the other kid is a competitive, aggressive, and "honest" to the point of being insulting. But they do look remarkably alike. More so now as young adults.

Another time DS and I did a special train event where the car attendant was a boy his age who was clearly a fellow traveler. A number of people on the train assumed they were brothers because they looked related. LOL, he and DS sort of butted heads over who knew more about the locomotive and DS didn't particularly like him. I suspect it was mutual- it was a long day. Turns out the two had been friends on FB for a couple years and had IRL mutual friends.

But the worst? Once I saw a picture of DS on FB I didn't recognize. He was holding a bunch of train magazines in the breakfast area of a house I could not place. He was a senior in high school and I wondered where he was and who he was with since I didn't recognize the house. I showed it to DS and asked. He looked at it for a minute, and told me it wasn't him- although he did really like the guy's tee shirt.

[bigpoppa22]

This drives me crazy. There is a large group of people who are generally wary of "the healthcare system" who react to my ASD disclosure with doubt and think that the system is just trying to take my money. Some others feel that ASD is overdiagnosed and DS doesn't have a problem. DS has been described as high functioning by all of his therapists, so I can see how a casual observer may think nothing of it - but don't crap on my efforts, my pain, and the hard work DS is having to put in to therapy every day.

On a side note - I am very early in the process, here. DS was diagnosed in February at 22 months and just starting 20 hours per week of therapy this past 3 weeks (ramping up to 23 hours over the next 3 weeks). I see a lot of comments from people here and elsewhere about ASD symptoms becoming much more obvious at age 3 and 4, but also about not getting a dx until 3 or 4. One of my big fears is that DS is high functioning now but that a lot more symptoms will become apparent or worsen over the next 2 years. Is that typical of children who start early intervention by age 2, or not really? I understand that social interactions become more apparent as kids age and the interactions are more complex. But should I expect other symptoms to pop up over the next 2 years, like stimming and sensory issues (very mild right now), rigidity to schedule/change (none at all right now), etc?

[mrsbuttinski]

Mar 30, 2015 10:52:12 GMT -5 bigpoppa22 said:

On a side note - I am very early in the process, here. DS was diagnosed in February at 22 months and just starting 20 hours per week of therapy this past 3 weeks (ramping up to 23 hours over the next 3 weeks). I see a lot of comments from people here and elsewhere about ASD symptoms becoming much more obvious at age 3 and 4, but also about not getting a dx until 3 or 4. One of my big fears is that DS is high functioning now but that a lot more symptoms will become apparent or worsen over the next 2 years. Is that typical of children who start early intervention by age 2, or not really? I understand that social interactions become more apparent as kids age and the interactions are more complex. But should I expect other symptoms to pop up over the next 2 years, like stimming and sensory issues (very mild right now), rigidity to schedule/change (none at all right now), etc?

It's really hard to say.

Most clinicians who use the term "high functioning" use it to differentiate from those who have ASD with an intellectual disability (IQ<70); isn't necessarily predictive of outcome in terms of being served in a mainstream classroom or being employed and independent as an adult.

Some behaviors, like rigidity and stimming, ramp up as children get older have greater cognition and memory especially around anxiety. Because ASD is a delay in social and emotional maturity that is 1/3 to 1/2 chronological age, kids can look less like their peers as they get older and more is expected of them in terms of behaviors and skills. It's not that they're regressing,. per se, but that they're not learning skills and maturing at the rate their peers are. For this reason it helps me to remind myself that however bright DS is, emotionally he's got the emotional toolbox of someone closer to 17 than 21.  

There are also potential comorbids that reveal as a child gets older. Tics, for instance, are more commonly first seen as a child approaches 6-ish. ADHD and LD issues might not be recognized apart for ASD until school age as well. Mental health comorbids like bipolar and depression are often seen as kids approach puberty. Schizophrenia is not generally seen until young adulthood. 

In terms of looking toward likely outcomes, I like James Coplan's 3 dimensional representation of ASD.


www.drcoplan.com/beyond-the-dsm-seeing-asd-in-3d-part-i-2

[mack]

Mar 30, 2015 10:46:34 GMT -5 mrsbuttinski said:

Nice post. She kind of skips over the notion that many who have not been in her shoes don't see ASD because they are trying to be supportive and even validate the work her child's team may have done with him. Sometimes a loving grandmother or family friend is coming from a place of genuinely not seeing a difference.

That said, I do think there's a look for some on spectrum that reveals with age.

Total anecdote here, but I have noticed that it's somewhat common for kids with ASD to be unusually attractive as younger kids. Some studies suggest it is related to an unusual degree of facial symmetry. I've heard others suggest it might be related to people being hardwired to find the face of a sleeping child appealing; kids on spectrum often have the same flatter facial affect as those who sleep. Often parents don't see this in their own child. DS had one classmate whose mom describes him as "animated"; sorry lady, my talking Barbie has a better range of emotions in her voice and on her face. Though he is a sweet kid and warms up over time.

I have a few friends I've met through an old support group specifically for Aspergers. These were some of the cutest kids imaginable at 5 and 7- gorgeous really. As young adults and teenagers, their faces have changed. Their features are more crowded, the way they hold their faces is less typical. Perhaps because they've become more guarded over time but they look less typical now than they did. It's a subtle thing. I suspect many might guess they're a little different based on that alone.

It's funny. DS was an average looking kid, but his looks have changed, too. There have been a few times when he has been mistaken for another scout we know on spectrum. These boys have little in common- the other kid is a competitive, aggressive, and "honest" to the point of being insulting. But they do look remarkably alike. More so now as young adults.

Another time DS and I did a special train event where the car attendant was a boy his age who was clearly a fellow traveler. A number of people on the train assumed they were brothers because they looked related. LOL, he and DS sort of butted heads over who knew more about the locomotive and DS didn't particularly like him. I suspect it was mutual- it was a long day. Turns out the two had been friends on FB for a couple years and had IRL mutual friends.

But the worst? Once I saw a picture of DS on FB I didn't recognize. He was holding a bunch of train magazines in the breakfast area of a house I could not place. He was a senior in high school and I wondered where he was and who he was with since I didn't recognize the house. I showed it to DS and asked. He looked at it for a minute, and told me it wasn't him- although he did really like the guy's tee shirt.

This is going to sound horrible. But I think DD is like an unusually attractive kid. She has huge blue eyes, perfect facial symmetry and a perfect nose. She has been that way since she was an infant. I love my other DD and think she is so cute, but it's just different. I know it's obnoxious to brag about your kid's looks and maybe I am delusional. 

[mrsbuttinski]

Mar 30, 2015 11:55:04 GMT -5 mack said:

Mar 30, 2015 10:46:34 GMT -5 mrsbuttinski said:

This is going to sound horrible. But I think DD is like an unusually attractive kid. She has huge blue eyes, perfect facial symmetry and a perfect nose. She has been that way since she was an infant. I love my other DD and think she is so cute, but it's just different. I know it's obnoxious to brag about your kid's looks and maybe I am delusional. 

Not horrible. Why is horrible to comment on looks? Physical attractiveness is a gift, rather like IQ or perfect pitch.

[mack]

I have also wondered if sometimes my DD fools people for this reason. Like they don't expect someone that is attractive would be on the spectrum?

[mrsbuttinski]

Mar 30, 2015 12:19:00 GMT -5 mack said:

I have also wondered if sometimes my DD fools people for this reason. Like they don't expect someone that is attractive would be on the spectrum?

The little ones almost always are. 

[rach]

Mar 30, 2015 12:22:53 GMT -5 mrsbuttinski said:

Mar 30, 2015 12:19:00 GMT -5 mack said:

I have also wondered if sometimes my DD fools people for this reason. Like they don't expect someone that is attractive would be on the spectrum?

The little ones almost always are. 

This is very interesting.  DD2, also on the spectrum, is also absolutely gorgeous.  I do feel her "cuteness" makes other more casual observers less apt to pick up on her other differences.  

She recently turned 7 and is described as high functioning by her therapists as well.  I have seen a big uptick in spectrum like behaviors over the last year though.  I suspect that is largely coming to light as her peers mature socially.  

I wish more people realized that ASD is not one size fits all.  Each person is so different!

[hopecounts]

I can completely identify with this.
DD is very mild behaviorally speaking, doesn't have melt downs very often, is a people pleaser who lives for praise so is usually cooperative, the issue is when she does melt down or decides not to cooperative it's big.
In the day to day she is only obviously different in her delayed speech and as that catches up that's decreasing as well.
But, her eye contact is poor, she is very sensory seeking, she can be impulsive, has little concept of danger, alternates between being inappropriately friendly and extremely stand offish, and so on.

She is also beautiful we get frequent comments from strangers and others about how pretty she is, mrsbuttinski she has a fairly flat affect so that fits with that theory.

[KC thepouchh8r]

Mar 30, 2015 10:52:12 GMT -5 bigpoppa22 said:

This drives me crazy. There is a large group of people who are generally wary of "the healthcare system" who react to my ASD disclosure with doubt and think that the system is just trying to take my money. Some others feel that ASD is overdiagnosed and DS doesn't have a problem. DS has been described as high functioning by all of his therapists, so I can see how a casual observer may think nothing of it - but don't crap on my efforts, my pain, and the hard work DS is having to put in to therapy every day.

On a side note - I am very early in the process, here. DS was diagnosed in February at 22 months and just starting 20 hours per week of therapy this past 3 weeks (ramping up to 23 hours over the next 3 weeks). I see a lot of comments from people here and elsewhere about ASD symptoms becoming much more obvious at age 3 and 4, but also about not getting a dx until 3 or 4. One of my big fears is that DS is high functioning now but that a lot more symptoms will become apparent or worsen over the next 2 years. Is that typical of children who start early intervention by age 2, or not really? I understand that social interactions become more apparent as kids age and the interactions are more complex. But should I expect other symptoms to pop up over the next 2 years, like stimming and sensory issues (very mild right now), rigidity to schedule/change (none at all right now), etc?

I can only speak of my child. She started early intervention at 16m due to failed hearing screen. She received lots of services--speech and ot 2xs a week, aquatic therapy an hour, social skills/floor time 4 hours. She was evaluated at 2 for asd. It was ruled out at the time due to well developed pretend play and social reciprocity during play. She went on to be diagnosed at 3 with mild asd. She is quite literally the mildest you can be on the spectrum-parent screens were right on the cusp and she only "failed" ADOS by a single point.

She still grew into symptoms. At 2.5 she began reading words off signs without any instruction. From 2-3 she rarely stimmed and it was easily redirected. It increased in frequency at 3+ though still seems to come and go. She began lining things after 3 though she does still mostly plays with toys functionally/appropriately. At 4 she has not grown into rigidity/deals well with change but I'm sure it's still possible.

The biggest difference is that her peers have grown leaps and bounds in language and social skills and she failed to keep up. She's made huge gains in speech and went from single words used to label to sentences and has a tremendous vocabulary...but struggles to use it conversationally. She still wants to play with adults over kids her age. That seems typical at 2 not so much at 4.

We have grown to accept she is going to develop on her own trajectory very different from peers. She continues to make forward progress so that's a victory.

[KC thepouchh8r]

My genecist told me that wide set almond shaped eyes are common in kids with asd/chromosomal abnormality. That feature is also common in models.

[junebug060609]

I used to get the "my kid does xyz, too" A LOT. I'm sure he does, well meaning relative, but does he do it for hours on end?

[litebright]

I related to SO much of this. Also the looks conversation. In one of DD1's IEP meetings in kindergarten, I was asking about interactions on the playground and her teacher said that she didn't typically have any issues proposing games and getting the other kids to join in. And then she added something along the lines of, "And, to be honest, she's beautiful, so of course she's going to be able to get kids to follow her." Basically that attractiveness helps, to some degree, in social interactions. Hell, I'll take whatever advantages she has to help with the deficits.

I hear very frequently that it doesn't seem like DD1 has autism from adults who spend limited time with her. I mean, it's nice to hear and all, but I bet any professional would be able to, and I'm also 100% sure that her classmates know *something*'s up even if they don't know exactly what, or are patient enough to deal.

The one that really gets me is the "she's so social!" comment from cashiers or strangers who don't know she has ASD. Yes, lol, except that the fact that she just met you and wants to give you a hug or touch something of yours is actually a sign of a LACK of social skills/ability to infer boundaries.

[mack]

KC thepouchh8r like this?

[mack]

Mar 30, 2015 14:00:10 GMT -5 KC thepouchh8r said:

Mar 30, 2015 10:52:12 GMT -5 bigpoppa22 said:

This drives me crazy. There is a large group of people who are generally wary of "the healthcare system" who react to my ASD disclosure with doubt and think that the system is just trying to take my money. Some others feel that ASD is overdiagnosed and DS doesn't have a problem. DS has been described as high functioning by all of his therapists, so I can see how a casual observer may think nothing of it - but don't crap on my efforts, my pain, and the hard work DS is having to put in to therapy every day.

On a side note - I am very early in the process, here. DS was diagnosed in February at 22 months and just starting 20 hours per week of therapy this past 3 weeks (ramping up to 23 hours over the next 3 weeks). I see a lot of comments from people here and elsewhere about ASD symptoms becoming much more obvious at age 3 and 4, but also about not getting a dx until 3 or 4. One of my big fears is that DS is high functioning now but that a lot more symptoms will become apparent or worsen over the next 2 years. Is that typical of children who start early intervention by age 2, or not really? I understand that social interactions become more apparent as kids age and the interactions are more complex. But should I expect other symptoms to pop up over the next 2 years, like stimming and sensory issues (very mild right now), rigidity to schedule/change (none at all right now), etc?

I can only speak of my child. She started early intervention at 16m due to failed hearing screen. She received lots of services--speech and ot 2xs a week, aquatic therapy an hour, social skills/floor time 4 hours. She was evaluated at 2 for asd. It was ruled out at the time due to well developed pretend play and social reciprocity during play. She went on to be diagnosed at 3 with mild asd. She is quite literally the mildest you can be on the spectrum-parent screens were right on the cusp and she only "failed" ADOS by a single point.

She still grew into symptoms. At 2.5 she began reading words off signs without any instruction. From 2-3 she rarely stimmed and it was easily redirected. It increased in frequency at 3+ though still seems to come and go. She began lining things after 3 though she does still mostly plays with toys functionally/appropriately. At 4 she has not grown into rigidity/deals well with change but I'm sure it's still possible.

The biggest difference is that her peers have grown leaps and bounds in language and social skills and she failed to keep up. She's made huge gains in speech and went from single words used to label to sentences and has a tremendous vocabulary...but struggles to use it conversationally. She still wants to play with adults over kids her age. That seems typical at 2 not so much at 4.

We have grown to accept she is going to develop on her own trajectory very different from peers. She continues to make forward progress so that's a victory.

This is my DD. She has had behavioral therapy in her school for her social skills since she was 4. So she fell 1 point short of diagnostic criteria on the ADOS. 

[NiteStar73]

Mar 30, 2015 11:55:04 GMT -5 mack said:

Mar 30, 2015 10:46:34 GMT -5 mrsbuttinski said:

This is going to sound horrible. But I think DD is like an unusually attractive kid. She has huge blue eyes, perfect facial symmetry and a perfect nose. She has been that way since she was an infant. I love my other DD and think she is so cute, but it's just different. I know it's obnoxious to brag about your kid's looks and maybe I am delusional. 

Nah - right when Chris hit about 3-4 years old, I can't even tell you the amount of times I'd hear "wow, he's REALLY handsome".  I definitely buy the symmetry thing.  I do remember at one point just looking at his face (after I'd read that article) and noticed that his face really was symmetrical.  He's getting older now and looking more like a boy and less like a baby but we still do randomly get, a 'what a handsome kid'.  

[bigpoppa22]

Mar 30, 2015 15:10:44 GMT -5 mack said:

KC thepouchh8r like this?

Hrm, wide set almond-shaped eyes, whatever do you mean?




Though to be perfectly fair, DD has my wife's exact eyes, nose, and block-shaped head.  (Insert tongue-in-cheek comment about wife's mental health)

[KC thepouchh8r]

Mar 30, 2015 15:10:44 GMT -5 mack said:

KC thepouchh8r like this?

Yes. Dd has the same eyes.

[leroybrown]

Mar 30, 2015 14:35:12 GMT -5 litebright said:

I related to SO much of this. Also the looks conversation. In one of DD1's IEP meetings in kindergarten, I was asking about interactions on the playground and her teacher said that she didn't typically have any issues proposing games and getting the other kids to join in. And then she added something along the lines of, "And, to be honest, she's beautiful, so of course she's going to be able to get kids to follow her." Basically that attractiveness helps, to some degree, in social interactions. Hell, I'll take whatever advantages she has to help with the deficits.

I hear very frequently that it doesn't seem like DD1 has autism from adults who spend limited time with her. I mean, it's nice to hear and all, but I bet any professional would be able to, and I'm also 100% sure that her classmates know *something*'s up even if they don't know exactly what, or are patient enough to deal.

The one that really gets me is the "she's so social!" comment from cashiers or strangers who don't know she has ASD. Yes, lol, except that the fact that she just met you and wants to give you a hug or touch something of yours is actually a sign of a LACK of social skills/ability to infer boundaries.

Yes. My 4.5 year old can't grasp that everyone she encounters shouldn't know her full name, her address, her parents' names, her siblings' names, and what's for supper.

[BostonKisses]

I so relate to this author, and it chaps my ass when people make comments like this. I know I'm going to get the double whammy once we get the official dx, because I already get similar comments regarding CF ("she can't POSSIBLY have CF! She doesn't LOOK sick!" Etc). Some people think they mean well, but it really minimizes things and can be extra irritating. It definitely is a spectrum, and I hope that people will come to realize that as awareness is spread.

[mack]

Classic example. Last night I caught up with an old friend who has known DD since she was a baby. She was shocked when I told her that Kenz had AS. She said "but she's so smart and so articulate. So I explained to her that for kids like kenz, the breakdown is social and emotional communication.

[cam]

Mar 31, 2015 6:33:01 GMT -5 mack said:

Classic example. Last night I caught up with an old friend who has known DD since she was a baby. She was shocked when I told her that Kenz had AS. She said "but she's so smart and so articulate. So I explained to her that for kids like kenz, the breakdown is social and emotional communication.

We got a "He's too smart." too. My LO doesn't have a classic autism presentation either (more of a PDD-NOS or HFA presentation), not to mention the definition of autism from many, many years ago has greatly expanded far beyond the lower IQ it was once associated with.