Aspies For Freedom

A special Brooklyn tale of autism - Neighborhood mom hopes son’s story will inspire others to walk June 3
By Lesley Grimm
03/29/2007


Michele Montanez and her son Brandon Montanez.
Brandon Montanez is about as cute as they come.

Decked out in his Mickey Mouse pajamas, he burns off a little energy before bedtime, darting in and out of the cardboard “fort” that sits in the corner of his family’s living room.

Brandon has bright blue eyes and shiny black hair, and when he’s tickled, he lets out an infectious and heartwarming giggle.

At first, Brandon seems like any other four-year-old—but such is the nature of his condition.

You see, this adorable youngster from Bensonhurst has autism.

“When most people think of autism, they think of ‘Rain Man,’ but it can be very subtle,” said Brandon’s mother, Michele Montanez.

“As Brandon gets older, I think it will become more obvious what is different,” she said.

Michele Montanez is sharing her son’s story in an effort to boost awareness of a disorder that is very common, yet widely misunderstood.

Montanez is also Brooklyn Borough co-chair of an organization called Autism Speaks.

She hopes to recruit local families to participate in the upcoming New York City Walk Now for Autism on June 3 at Battery Park. The event will raise money for autism research.

Ahead of this fundraising walk, Autism Speaks is holding a Brooklyn Kick-Off luncheon on March 31 at KeySpan Park.

“I felt the need to do something,” Montanez said.


Montanez became involved in fundraising for autism soon after her son was first diagnosed.

“I found grief to be completely unproductive. It was getting me nowhere. It wasn’t helping him, it wasn’t helping me and it wasn’t helping my family,” she said.

At about 17 months, family members started noticing some abnormalities in Brandon’s behavior.

Brandon didn’t answer to his name, and he wasn’t imitating children’s hand games like “pat-a-cake.”

“I was so thrilled at having this nice quiet first child that played all off on his own,” Montanez said. “It never occurred to me to be worried.”

Brandon underwent a series of tests and evaluations by the New York State Early Intervention Program, and at 18 months, he was diagnosed with PDD-NOS or Pervasive Developmental Disorder, Not Otherwise Specified.

PDD-NOS is one of a group of disorders known as autism spectrum disorders (ASD’s).

These developmental disabilities impair social interaction and communication, and are also associated with unusual or repetitive behaviors and rigid routines.

The thinking and learning abilities of people with ASD’s range from gifted to severely challenged.

Brandon’s condition sits towards the moderate to mild end of the “spectrum.”

Indeed, this is all very complicated and confusing, and there is much debate as to what officially constitutes “autism.”

But Michele Montanez isn’t drawn into that dispute.

“When people ask me what is wrong with my son, my answer is autism,” she said.

Immediately after Brandon’s diagnosis, he began intensive therapy with Early Intervention.

When he started Early Intervention, he wasn’t speaking at all. He would only whistle, and make an “odd guttural sound” in his throat.

Now, words seem to flow from Brandon’s mouth.

He will quote phrases from his favorite television shows, but his ability to answer questions or interact with others remains limited.

But Brandon does seem to have a pretty typical “sibling” relationship with his younger sister, two-year-old Cady.

The pair will play together and will even wrestle and bicker over toys.

Montanez says she has learned to appreciate moments like these—the “little things.”

But while there are glimpses of normalcy, Montanez says her son’s attention span can be measured in “nanoseconds.”

“He gets very upset when you try to get him to adhere to rules and conventions,” she said. “He wants to do his own thing his own way.”

Brandon now attends school five days a week with other children with disabilities, and he has additional speech therapy and coaching at home.

If he is ever able to attend a regular classroom, he will probably always need some kind of support at school.

While many people consider autism to be a childhood disorder, it is a lifelong condition. Most autistic children will grow up to be autistic adults who require support.

Completing simple tasks with Brandon can quickly turn into an ordeal. For instance, a quick trip to the hair salon is a “nightmare,” according to his very patient mom.

For whatever reason, Brandon cannot stand having his hair cut.

His mom has to hold him tight, as he screams and cries and tries desperately to wriggle away.    (Don't plenty of normal kids do that?)

Montanez says situations like these are both heartbreaking and embarrassing.

“Everyone’s looking at him, like what is wrong with your child and why can’t you control him,” she said.

While doctors now know much more about the symptoms of autism spectrum disorders, no one knows for sure what causes them.

Scientists believe that both genes and the environment play a role.

Last month, the Centers for Disease Control released new data showing that 1 in 150 children in the United States are diagnosed with an ASD. Autism is also four times more likely to occur in boys than in girls.

Autism will affect more children in the United States than pediatric cancer, diabetes, and AIDS combined.

New research shows that when parents suspect there is something wrong with their child, they are usually correct.

In the case of autism, early intervention is critical, because studies show that appropriate therapy during the preschool years can result in significant improvements for many children with ASD’s.

To have your child evaluated, call the Early Intervention program in your county.

In New York City, call 311, or call the New York State Growing Up Healthy 24-hour hotline at 1-800-522-5006.

For information about recognizing the early signs of developmental and behavioral disorders, visit the Centers for Disease Control at http://www.cdc.gov/actearly.

Autism Speaks also has a comprehensive website at ww w.autis mspeak s.org with information and resources.

The Autism Speaks Brooklyn Kick-Off luncheon is scheduled for 1-3 pm on Sunday, March 31 at KeySpan Park.

There will be activities and entertainment for children, a guest speaker for parents and information on how to get involved in the June 3 New York City Walk Now for Autism.

To RSVP for the free Brooklyn Kick-Off event, visit w ww.au tismwalk.o rg/nyc or call 646-421-4576.

[edit] links broken [couldbecousin]

"What's wrong with yours ?"

"I'll tell you, if you'll tell me why you think you have the right to walk up to complete strangers and ask them offensively-worded personal questions."

"He's four."

I would guess "self-fulfilling prophecy" here, actually, combined with the increasing propensity of psychiatry to label even mild eccentricity as pathological something-or-other. The Onion did a hilarious parody a few years back about "the terrifying epidemic of  'Youthful Tendency Disorder', which afflicts more and more children across the nation". Unfortunately, I can't dig up a link to it.

Wow... so this kid is four years old and they're already saying he'll need support all his life?! Way to make predictions, guys.

what a terrible article.  expect more of them as the big lobbying groups start to lobby away our rights this coming month.

first off, not talking and not imiating isn't the end of the world.  i find imination stupid at most times, and i usually imitate mostly as part of a joke, and rarley serious.  and responding to the name, prehaps they are responding in a diffrent way, or you can't exactly hear it because you are bombarded with so many other noises it's hard to hear or daydreaming.  and i wasn't talking at 18 months, and i'm doing just fine.  i think we've entered the era where if your children don't do exactly the same thing at the same time, it's a disease.

and besides, i thoght most children cry when they get their hair cut at that age.  i would like to see a little boy that actually behaves like and adult, that's rare.

and what's this about most autistics requiring support?  does that mean group home, insutitonlized, childlike brain less than human support?  or does that mean just plain old regular support?  becuase everyone needs support, but i doubt they are saying that.  it's likely that we are assumed to be unable to go to college, live on our own, etc, and are doomed to burden familes forever.  i guess only the savants get to surivie.  only reason i haven't moved out yet is mostly finacial, and partly because i'm not ready yet to move on my own.

and i bet the early intervention they speak of is more likely obidence training.  sickening.  my first memories were of me at the house enjoying time with my family at my house, not some drills, and my life isn't in a bunch of documents of behaviors.  over time, autistics will adjust to the world around them and be more "normal" naturally, it's not like we're stuck at a 2 year old state forever.  we grow up, but at diffrent stages.

and why are we being compared to deadly diseases again?  i guess they would like to put us in a hopstial next to the kid dying of a tumor and suffering, while we are neglected due to miscommuncation between others.  autism is not a disease.

ugh.

yep, it's getting worse, our lives are going to be like dogs.  i guess many parents don't want children, they want pets they can talk about all the time, and when one of them is a cat, they turn them into a dog.

when autism was "rare", diagosis didn't mean this much sitagism, but now, it's terrible.  i probably won't seek diagoisis for my children (if i have any).

from the article:  
Montanez  said  “I found grief to be completely unproductive. It was getting me nowhere. It wasn’t helping him, it wasn’t helping me and it wasn’t helping my family,” she said.

I wonder what she will say when she finds out that Autism Speaks is completely unproductive and will do nothing for her and her family.

Austism Speaks is even at our toy store now.  It's simply got the momentum.  People want to do "something" about the perceived epidemic and, not knowing what else to do, they jump on the most popular bandwagon that happens to be coming through town.

One highlight in the story that I do want to comment on:  The average 4 year old does NOT kick and scream when getting a hair cut.  The average 18 month old, yes, but the average 3 or 4 year old, no.   Still, there ought to be a better way to handle it than what this mom is going through.  To me, cutting hair can't be THAT important, you know?  Why can't she try different things out, slowly get him used to it, etc?

Anyway ...

My little brother is ten and still can't stand having anyone touch his head.  My mother's solution?  Let him have dreadlocks.  He has beautiful curly golden-brown hair, and we basically let it tangle as it wanted to.  It's about shoulder length now, and looks pretty good.  He gets compliments on it all the time.

There's no need to force kids to go through things that are physically painful for them a lot of the time.  Parents ought to be more open to seeking out alternatives.

Welcome to the forum, Michele!    It's great to see you've changed your outlook.

Yeah, a lot of people who support Autism Speaks, do so because they want to do something good and that organization seems like the avenue to do it. It is such a shame that they do so little good, and so much negative and/or wasteful (such as research for a pre-natal test and the negative propaganda).

In my opinion, the best "something" that anyone can do for autistics is to try to understand us better, through a personal and individual rather than a medicalized or over-generalized framework.

I wasn't diagnosed until age 10, mainly because 1) my dad is on the spectrum as well, so when someone noticed something odd about me, he'd say "I was EXACTLY the same way at her age", 2) I never went to pre-school, or any childcare except for one-day babysitting from my aunt when I was about 5, and in early elementary school my dad would come and help me out by my desk during the day a lot, so I basically had a 1-on-1 aide without the school having to diagnose me, and 3) my unresponsiveness and speech, attention, and processing difficulties were mostly blamed on me being "attention-seeking", and badly-behaved, as they figured that I couldn't possibly have the difficulties I had, since I did well on spelling tests and they'd seen me speak.

Incidentally, my dad and I were watching I Love Lucy the other day, and in that episode their kid said a single word at the age of two, and my dad furrowed his brow and said "two years old?" He seemed to think this odd.

No one remembers when I started speaking; it wasn't late enough to be noticed by my parents, but it's not like they keep up with the official "milestones" very much, and my dad has an erratic memory like mine (in that he'll remember stuff pretty randomly, so he doesn't remember the first words I ever spoke or when, but he'll remember some odd little detail that seems insignificant). Also, my parents have few friends, and it was rare that I would be around other adults for any length of time.

I still can't handle official type haircuts. Fortunately, I'm not especially concerned about my looks (in that I don't fret over having a particular style of hair or not, and usually dress for comfort and convenience rather than fashion), so I get my hair cut by my dad at home.

This also makes washing my hair easier, and I can get my hair cleaner now with shorter hair. Also I will begin to brush my hair independently, which I get overloaded and distracted and takes me hours with longer hair, but with shorter hair I can usually manage in much less time, though I'll need more practice before I move out, so that I can keep my morning getting ready time down to about two hours.

I agree: autism doesn't define the entirety of me, but it's a big part of who I am, and erasing autism would be like erasing my childhood and development and perceptions. My dad once told a co-worker about how he and me were both autistic, sometime shortly after I was diagnosed, and she was flabbergasted that he'd told me about my diagnosis. She said, "How can you label her like that?"

Which I was totally confused about, since it's not like he said, "You have a terrible affliction and it's called autism"; he said, "You have a different brain wiring that causes you to think differently and that's why some things are more difficult for you". For me, it was just the word I used to replace the one I'd already named for myself - weird. While that's accurate too, autism is more descriptive of the particular kind of weird, and for someone who understands enough about it, this has less negative connotations.

Hi Michele, and

WELCOME!

I am really impressed that you are trying to see the world from his point of view!

I found the most frustrating parts of interacting with the majority of people are:

a) that they will insist on guessing what I'm thinking, instead of simply asking me.

b) that they expect me to guess what they are thinking instead of simply telling me.

Raising my own five and minding my youngest grandson I found that the only way to avoid stressing the child is to explain everything. when they were babies I would keep up a running commentary on what I was doing next, and why. I would stop and wait patiently for them to respond. Just because a baby does not have the muscle control to make words, doesn't mean that they don't have the mental capacity to learn what words mean and every baby I've ever chatted to loves being allowed time to make noises back!

As the children grew, I still explained everything.

This form of communication was natural to me; being autistic it simply never occurred to me that people are 'supposed' to know instinctively what other people are doing/thinking and why! As part of a long line of autistic people it is normal communication in my life to explain everything.

'Youthful Tendency Disorder'

Or this version (has other useful, serious articles too!)

Harry Enfield - Kevin becomes a teenager

  Those are great!!!

When my boys were small, I used to cut their hair in the bath - the old-fashioned way, with scissors and comb. The hair washed off as it was cut, and a quick rinse with a jug at the end of bathtime ensured no itchiness afterwards.

Instead of just earplugs, perhaps in-ear phones with some favourite music playing?

Trying to think of alternatives...

Of course, now three of the boys and my daughter all have long hair (as did I until Autistic Pride Day! )

So they made their own choices!

It is communicating that helps reduce stress - sometimes the greatest skill of parenthood lies in knowing which questions to ask to get the answer that will solve the problem!

Sometimes things just have to be done in one shot!

Although I think I might understand where you're coming from on the 'disabled' thing (as I don't find my autism anywhere near as disabling as certain people might think it is) there might be a better route to understanding how others feel by saying things like:

"I don't want my son growing up to think that being different or disabled means he's less valued".

"I don't want my son to feel that there is anything he cannot achieve just because he's autistic"

"I want my son to know he is loved because of who he is, not in spite of it"

Well, my mom has a friend with a two year old child Shelby that hasn't spoken yet, and she's worried that she might be autistic or just not raised properly. If Shelby is autistic, I'm certainly going to jump in, because I doubt the mother is going to get the right information in order to give Shelby support. She probably will support all these cure organizations after seeing ads, articles, and professional books on autism.

I do not recommend using Bryna Siegal's Helping Children With Autism Learn. It's not about helping children with autism learn, it's about molding their behavior into the "norm," to make it easier on the parents and teachers. It is about making sure they imitate other kids, be like others (she actually wrote that!), have peer buddies hired for them to show them some more age-appropriate interests, etc. IT'S ABOUT CONFORMITY!! And she thinks that just because some autistic individuals don't speak, that means they are mentally retarded. What an idiot! The minute I started reading this book, I knew that something was missing. Autistic perspective. Well, I can't say too much about that, as it was written in 2003, right before us ND activists spread our words as an attempt to wake these people up.