happy that I started to come to the GRASP/AHA support
group. I found a babysitter for my daughter so
I was able to attend and it has been wonderful!
I fit right in and it's the best thing I did for myself.
I have friends from the group and we talk and do things
together. We all have a good time.
I received a warm welcome and was overwhelmed with
beautiful flowers, butterflies in my presence.
we listen to different flowers;
one has it's own uniqueness and special gifts.
flutter, birds sing,
all were searching for levels of comfort and to fit
in a group.
Unique quality of all these flowers have Asperger's
by Teri Schwartz
doesn't he look people in the eye?"
"Does he ever sit still?"
"Why is he always pretending?"
"He seems like a brat to me!"
"I'm six and I know dinosaurs aren't real!"
"Why won't he play my game with me?"
"Let's hide so the weird kid won't find us!"
comments, questions chill me
To untrained eyes it's invisible
My son's another spoiled only child
They don't know the diagnosis or symptoms
Unaware it's something he'll never outgrow
Medications, Psychologists, Therapies
All tried, improvement marginally momentary
It's all part of the Spectrum I'm told
Behaviors typical of non-neurotypical kids
he doesn't make eye contact enough
He's always in motion, never winds down
Always the safe landscape of his imagination
Can't handle noisy, dark environments
Difficult for him to separate fantasy, reality
Fails to realize he's misunderstood, spurned
do I explain this unseen ailment to
A material, seeing-is-believing world
Will anyone comprehend if I find the words
Special Ed. a stigma, Disabled a label
Intentions misunderstood, Options few
Support Groups, Battle wearied moms
We must stay within the Spectrum- scene
Socialize with the ones who share our plight
is not just a disorder,
it's our dilemma.
excerpt from Long Island Expressions: LI Writers
for Autism Awareness available at www.liexpressions.com
Diagnosis & Transition Issues
read in Albany - January 2001
the goal of education is to produce a functioning, productive
member of society, New York State Education Department
(NYSED) has failed many, and continues to fail many,
individuals with HFA/AS/PDD (High Functioning Autism,
Asperger's Syndrome and Pervasive Developmental Disorders)
and their families.
When the full spectrum of all these disorders is included
the statistics would be staggering. Tony Attwood, Ph.D.
and John Pomeroy, M.D. state that the incidence is 1
in 250. HFA/AS/PDD may be medically different, but are
educationally the same, which is vitally important because
the treatment for Autism Spectrum Disorders (ASD) is
education - appropriate education, and "education"
is not a synonym for "academics".
Lack of access to services from VESID (Vocational and
Educational Services for Independence for Disabled)
has an enormous negative impact on the quality of life
experienced by these students, adults and their families.
Because many of the students labeled with higher functioning
autism spectrum disorders may seem to have less educational
needs, their lack of functional, vocational and daily
living skills are overlooked and they will fail in life.
This is VESID's responsibility. NYSED has the power
to change that.
My son Michael is 28 years old. He lives at home and
falls within the high functioning range of autism.
Although we knew at age 2 1/2 that Michael had a speech
problem, our pediatrician told us to wait until he was
4. "He might outgrow this stage and improve"
was the philosophy in those days. At 4 he was diagnosed
with LD (learning disability) and then the archaic term
of MBD (minimal brain damage) at the North Shore Hospital
Children's Diagnostic Center where he received speech/language
therapy for a short period of time.
What he really needed was intensive language therapy
but we didn't know that then.
North SHore recommended a BOCES (Board of Cooperative
Educational Services) placement, which he attended for
kindergarten and 1/2 of First Grade. He had picked up
a great deal and was too academically capable to remain
It didn't take long for the teacher in his regular first
grade to pick up on his social and language difficulties.
The school did their own evaluation, classified him
as learning disabled and placed him in a self-contained
He was misdiagnosed, misclassified, misunderstood, miseducated,
and mistreated throughout school. Because of this he
fell through the cracks of standard special education
strategies although there was a lot of attention directed
His IEP (Individual Education Plan) twice, said he had
"some autistic symptoms". When we asked about
that we were discouraged from using the term autism.
Throughout school we were told by his private Psychologist
as well as the Director of Special Education, "Why
do you want to label him? Labels will just hold him
back and place him in BOCES, which would have been inappropriate
for him. We were discouraged from ever appropriately
classifying him, labeling him and getting him the help
By Fifth Grade he was fully mainstreamed with Resource
Room. Yet he struggled. He never learned the skills
that he needed, to be fully mainstreamed. He was lacking
in many of the needed skills for doing higher-level
academics e.g., research, writing a term paper etc.
In addition he lacked Executive Function. Which means,
difficulty engaging in planning activities, problems
with organizational skills, impulsivity, preservation,
lack of future orientation (transition problems) difficulty
with self-monitoring, both in terms of accuracy and
progress toward a goal.
His disability not only impacted on academics, it impacted
on his whole life, for e.g. social skills-he had no
formal help with this. He does not get social clues-this
is part of his disability.
Secondary School was often a nightmare for him. He still
can't forget the bullying, teasing, kicking etc.
He has some paranoia. This may be because he doesn't
know if people like him. He wants to be liked. He has
trouble reading facial expressions. Again part of the
disorder so he can't tell. Off and on he has suffered
from periods of depression, loneliness, anxiety, anger,
agitation and mood swings. He has trouble shifting to
relaxation methods when he's stressed.
We were not well served by many of the professionals.
I recall the attitude of a resource teacher who told
me, "You do too much for him". We didn't realize
that he was a visual learner, that he would learn better
if things were broken down in steps for him. We will
never know if modern day early intervention would have
helped him with his academics, social skills and language.
Academically he struggled through and he graduated at
18 totally unprepared for the next step. His transition
plan was useless. It didn't prepare him for life after
Professionals saw him as college material. So he's smart,
Let him grow up; send him to an "out of town college"
(they assumed that this was a solution, little did they
know). Our gut feeling was that they were wrong but
to satisfy everyone we checked out a few colleges in
CT and Mass.
When we took a look at the kind of students that were
walking around on campus it was so obvious to us that
he would never fit in and it would never be the right
thing for him. He simply didn't have the skills; he
had inadequate independent living skills, social skills
and academic skills to be independent.
Transitioning from High School to a local college was
enough of a change and challenge for him.
He was accepted at Dowling College in the LD program
where he had a tutor twice weekly. In some ways college
was a holding pattern for Mike till we found out what
he could do next. He did understand some of the academics
but he really didn't have the skills for college.
He drove himself to college, a part-time job, and jiu-jitsu
2 times weekly. He continued jiu-jitsu until 4 years
ago when he was 24. He had no friends or social life
of his own.
At age 19 it was realized that he wasn't accomplishing
the needed independence or learning academic skills.
There were missing pieces. He was thought to be ADD
(Attention Deficit Disorder) but after a diagnosis by
Dr. John Pomeroy of Stony Brook we found out to our
surprise that he indeed had autism, HFA. He had many
of the symptoms, was more able in many areas but needing
so much help with social skills, interactive language
This was the beginning of a new awareness for him, for
us... It was such a relief to understand ...why. We
were now sure that it wasn't our or his fault.
Eventually Mike came around to accepting his diagnosis
and finally having an explanation for why he was the
way he was. He knew for the first time that he was not
alone, he met others who had similar diagnoses. We looked
for opportunities to bring him together with others
so he knew he was not alone and he could have others
to identify with.
He was very fortunate to obtain a job but a few years
later we approached VESID to get a job coach. We saw
the value of the support and structure that he needed
on the job site.
The job coach is needed to customize the environment
so he can work with people and so he's not isolated
and in his own space.
VESID is extremely important to someone with HFA/AS/PDD.
VESID has the ability to support, change and improve
their quality of life.
- needs to provide trained job
- use visuals, written or pictures with
job procedures and sequence
- break jobs down into small steps depending
on the individual
- create sensitivity for other employees and employers
needs to provide daily living skills such as:
- money management
- time management
- travel training and/or transportation,
which is affordable. (Transportation was an issue
for our Mike. He needed a sense of independence and
ability to get around by himself. Public Transportation
was more than a mile away; therefore he needed to
drive to get to all of his activities.)
of this is still happening today, much of the Education
community and VESID does not fully comprehend their
role with regard to AHA/AS/PDD clients.
Sadly, we are reminded that the reality is that these
facts are not isolated. Families are so overburdened,
particularly families of individuals with autism spectrum
disorders over 21. If they don't have a job or go on
to school after high school they are at home and usually
completely isolated from the outside world. Their immediate
family is often their only contact. They may sleep to
all hours of the day or watch TV all day. The lack of
structure and activities may lead to anxiety, depression,
anger or agitation.
When Mike stays home he is bored, lonely, restless and
hasn't enough structure. I try to provide some but I'm
just his mother and he needs more contacts.
It wasn't until the passing of NYS CARES that we were
able to find people to spend time with him. Sadly, the
only people in his "circle of friends" are
people that are paid. Mike's been designated to be in
a group home with similar people. He needs to move out
to be have a life of his own, a chance to grow as an
adult, an opportunity to be more independent. We look
forward to seeing him begin a fulfilling adult life
sometime in early spring 2001. Not to complain... and
we are so grateful, but it's through our enormous efforts
that we reached this goal.
Everyone deserves to have a life that is fulfilling,
he has the capacity to have one, and his disability
could be compensated for with housing and good supports.
We want our kids to move along the continuum, we don't
expect a cure.
This story is being unnecessarily repeated over and
Imagine- A Personal Story:
With thanks to the Wisconsin ASA
is Autism Awareness month and like many parents, children
and adults dealing with Autism, I'd like to elicit some
understanding toward our lives. My son was diagnosed
with PDD at the age of 4 1/2. PDD (Pervasive Developmental
Disorder) is the main category of Developmental Disorder
under which Autism fits. I believe Autism to be a spectrum
disorder with many different symptoms and a wide range
of severity. Many autistic children are very functional
and many adults with Autism have very successful occupations
and are living happily (although not without difficulty)
among us. Because my son is not as severely afflicted
as many depicted in the media, he is often misunderstood.
He has many sensory integration difficulties (when the
brain does not properly interpret the sensations taken
in) that cause him to appear aloof and make it difficult
to relate to the world in a socially appropriate manner.
I belong to two support groups on the inter net and
one such group gathered these phrases to help describe
what it's like to be Autistic. If you will allow a few
moments, won't you please...
feeling like you're about to fall backward off a tilted
-walking into doorways that seem to be wider than they
-stairsteps are not where they seem to be.
hungry but not having the words to express it.
-not associating the feeling of hunger with the need
-a spoon in your mouth is painful.
-only being able to eat the blandest, softest foods.
-food causing aggressive behavior.
-The smell of food is overwhelming.
actual pain when someone screams or plays high-pitched
-sneezing, sirens, blenders, drills, fire alarms, grinders,
scare the begeebers out of you.
-having unusual fears or phobias.
-having sleep patterns that neither fit with family
nor achieve restedness.
being able to tolerate a hug, tickle or congratulatory
pat on the back.
-holding hands hurts.
a teenager with no friends.
-being teased, bullied and manipulated by peers.
uncontrollable rages, facial expressions.
-act impulsively without regard to danger or other people.
-not being able to look someone in the eye, or recognize
-being blind to all forms of non-verbal communication.
-employment opportunities are limited or denied.
-independence is elusive or modified.
And just imagine having a child with many or all of
Please know that the children you see acting out in
grocery store check out lines are often NOT naughty,
rude nor poorly parented. Many have a neurological disorder
that prevents them from dealing with situations you
and I handle easily. Life is not easy for children and
adults with autism nor for their parents. We all ask
for your understanding and tolerance.
Dedicated to Abby Irwin
line the lashes of long dry eyes
for she had held out for so long
almost every time she would go to those oh so knowledgeable
oh so learned doctors to see how she was doing
they would send her home with an unhappy smile
and tidings of the news that she would have but 5 months
hoping to god that her offspring would take it and see
it as she saw it
another reason to fight
and make sure that even though tomorrow may be our last
that we live it as if it were.
But 5 months would pass and she was still there
to those doctors I had but 3 words to say "not
She would repeat this routine for 13 years
not even close
not even close
not even close.
Until this 13th year
her health would waver
but her strength would not
on this 13th year they gave her 6 months
and sent her home tired and worn from battle
she died about 4 weeks later
Valkyries welcomed her to Valhalla, a warrior in heaven,
with open arms
I still had something to say to those doctors
But this time in 4 words
hey, you were close
No words from my mouth
No noise, nothing
Just silent, alone
I was strange, different
Not deformed, just different
I grew, I gained a voice
Three mothers helped
One father helped
Many friends helped
Two siblings helped
Whole family helped
I grew, became a scholar
Already could read
Higher learning self-taught
Opened eyes, still innocent
Locked away, system's bane
Doctor came, made more for me
Gave me the key to the real world
I grew, became smarter
Life grew harder
System's bane, get rid of me
No more public eye
First one too rigid
Cold clones walk the grounds
Richness in snobbery
Left, went somewhere warm
Became the mother hen
Became the poet
I grew, found a life
I found true friends again
I found higher learning
I found my calling, writer
I found love, a Russian bear
I found a life
I found a degree
I found work
Rough outside, but not
Rappers dog, human delight
Welcome to a brand new life
I am Mae Francois; I am 21 years old as of this
writing. I have a degree in creative writing from Dowling
College and I have been through a lot in my two decades
of life. Currently, I am engaged to a young man named
Sergei from Russia and working as a secretarial assistant
at a repo company, which is my first job. I started
out not even talking, and many thought I would never
lead a normal life, but I eventually proved them wrong,
with the help of my family and my three "mothers".
to an Aspie Girl
walk though a fog, The glass jar is there.
The world's full of robots,
Who don't seem to care.
I don't understand how humans can huddle,
While I trip and fall and land in a puddle.
Why is it so I can't socialize?
Yet so many things I do memorize.
A life of abuse and neglect from my peers.
With the eyes of a fearful yet curious deer.
It may not seem right to be so alone.
But one thing is certain,
I'm never a clone.
Also by Laura Wysolmierski:
so they say
don't look away
make eye contact
Pupil penetration can cause brain freeze
I see into your soul but I can not speak
I look to the ground and I can speak again
No need to repeat yourself
I can hear you just fine
Louder is not better, only more distorted
Don't offer me wine to loosen me up
I already feel drunk
Don't slap me on the back to give me reassurance
Soft kind words will always suffice
Don't always assume I know what you are thinking
Honesty's less painful than confusion
Though the windows of your soul
are a thing of beauty
The windows of your mind are much complex
you would like your personal reflection to be considered
for inclusion, please email
your story to us.
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