Autism First Steps 11-28-01 (Part 2)

AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER
Wednesday, November 28, 2001

INDEX:
*   Social Tips: Giving and Receiving Gifts
*   Autism & U. S. Airport Travel
*   FREE AIRFARE FOR OUT OF STATE MEDICAL APPOINTMENTS
*   Seeking Contributors to Book
*   Communicative Disorders Clinic (UofM
* Treatment of pyruvate carboxylase deficiency with high doses of citrate
     and aspartate.
* neonatal screening shows high incidence and unexpected mutation
     frequencies.
*   Glutaric aciduria type I: from clinical, biochemical and molecular diversity to successful therapy.
*   Brain 'Asymmetry' Works for Reading Skills
******************************

Social Tips: Giving and Receiving Gifts

Social Tips for Giving and Receiving Gifts:
For many kids with LD, the demands of the holiday season
can be especially difficult. Rick Lavoie offers his advice.
http://www.schwablearning.org/Articles.asp?r=386&g=2&d=2

Dear Parents,

The holiday season is always a very special time of year!
Families gather...gifts are exchanged...greetings are
given. This year, the holidays will take on an even greater
significance for most American families. Most of us will
find that the customs and rituals of the holidays will
serve as a balm for the pain and hurts of September 11. The
holiday season will enable us to connect with familiar
people, places, and things.

The holiday rituals require us all to be socially aware and
responsive. This, of course, is exceedingly difficult for
many kids with LD. Despite their best efforts to “fit in”
they often unintentionally offend, upset or -- at best --
confuse their relatives and friends. Their inability to
respond appropriately in social situations is a source of
puzzlement and angst for relatives. I well remember a mom
of a child with LD who was asked by the child’s
grandparents to arrange for a sitter for the child rather
than have him disrupt the family holiday celebrations. What
a painful situation for all.

As the parent of a child with LD, you must come to
understand (and embrace!) the fact that you have two
responsibilities that you must attend to whenever you place
your child in a challenging, complex or new social
situation. You must:

Prepare the child for the situation and prepare the
situation for the child.

In this spirit, you should begin to focus your child on the
social expectations and demands of the holiday season and
assist him to navigate these activities.

Below are some basic “tips and tricks” that you can teach
your child in order to prepare him for the rituals of the
holidays.

------------------------------------------------------------

Social Tips on Buying and Giving Gifts

Give each gift very careful thought when you are shopping.
Remember: It is the thought that counts! A perfect gift is
something that the recipient will really enjoy and use. A
gift related to a person’s interests or hobbies is always
appreciated, and it shows that you are listening and paying
attention.

Remove the price tag.

But try not to damage the gift when you do.

Wrap the gift.

If you don’t know how to wrap, ask someone to teach
you...it’s a valuable skill. If you really can’t wrap, use
a gift bag or aluminum foil. But don’t give an unwrapped
gift or one in a plain brown bag. Tacky!

Include a card.

Buy one or make one...but include it inside or taped to the
outside of the package.

Be confident and positive when presenting a gift to
someone.

Do Say: "Happy Birthday!" "Happy Hanukkah!" "Merry
Christmas!" "I hope that you like it!" "When I saw it in
the store, I thought of you!"

Don’t Say: "I couldn’t spend very much!" "I didn’t know
what to get you!" "You probably already have one of these!"
"I know you won’t like this!"

Remember the "STPT" of gift giving.

Selection: What is the relationship between the gift and
the recipient? Is it appropriate? Inappropriate gifts: A
Smashing Pumpkins CD for Grandma; a Shakespeare collection
for a 4-year-old; a motorcycle helmet for someone who
doesn’t own a motorcycle; a box of candy for your aunt who
owns a candy store; a Britney poster for your minister.
Timing: Give a gift on or before the special day, if
possible. That demonstrates your thoughtfulness.
Proportion: What is the relationship between the giver and
the recipient? How much time and money did the gift cost?
Too much? Not enough?
Taste: A gift should never be offensive or insulting; joke
gifts can backfire! Giving a “Bald Joke Book” to your
hairless uncle might not be too cool if Uncle Frank is in a
bad mood when he receives it! Gift-giving is an opportunity
to be nice and kind!
Social Tips on Receiving and Accepting Gifts

There are only two appropriate ways to accept a gift:

With great pleasure
or
With greater pleasure
Some neat things to say when you open a gift:

“Thank you so much!” “It will look great in my room.” “I
know that I will enjoy reading/using/wearing it!” “These
will keep me nice and warm!”
Some crummy things to say when you open a gift:

“How much did it cost?” “Not another
sweater/wallet/watch?!?” “Why did you get me this?”
Even if you are disappointed with a gift, remember: It is
never appropriate to hurt another person’s feelings.

Social Tips on Returning Gifts

It’s okay to return a gift to the store if you already have
an identical one (e.g. CD, book, etc.) or if it doesn’t fit
(e.g., sweater, gloves, dress, etc.).

The important thing is to avoid hurting anyone’s feelings.

It’s best not to tell the giver that you returned
it...unless they ask.

If they ask, then say something like, “I really loved the
*NSync CD. In fact, I liked it so much that my friends gave
me the same CD for my birthday last month. So, I returned
yours and got the new Britney CD. It’s great!”

Writing Thank-You Notes

It is important to write thank-you notes.

Don’t think of this as a chore...rather, view it as an
opportunity to make the giver feel good.

It’s not required that you write a thank-you note to a
person you have already thanked verbally...but, it’s not a
bad idea.

It’s impossible to over-thank!

Write a note as soon as possible after you receive the
gift.

Again, this demonstrates your thoughtfulness and good
manners.

Write by hand, if possible.

Although it’s okay to write a thank-you note on the
computer, it’s best to do it in your own handwriting. If
you do type it, make sure that you sign it by hand.

Don’t begin the note with “Thank you for...”

Give some news first. For example:

Dear Grandpa,

We had a great time at your house last week and the plane
ride home was fun. I never flew on a small plane before.
The pilot showed me the cockpit.

I wanted to thank you for the great computer game you gave
me, etc.

Always mention the specific gift that you are
acknowledging.

Example: “I really love the Who Wants to be a Millionaire
CD-Rom that you gave me for Christmas,” or “All of my
friends love the snowflake sweater you gave me.” Avoid:
“Thanks for the gift. It was neat.”

If someone gives you money, use the thank-you note to tell
the person how you will spend it.

Example: “I will use the money to buy a new baseball
glove,” or “I will save the money for our March trip to
Disney World.”

A Final Note...

Your child with LD should be viewed by all as an important
and contributing member of the family who should
participate fully in all traditions and rituals that your
family cherishes. A little extra planning and coaching will
ensure that this occurs!

Watch this column! In a few weeks we will run a special
feature designed to assist your child in becoming a
gracious host and a welcome visitor.

Happy Holidays!

About the Author

Richard D. Lavoie, Director of Schwab Learning, is a
recognized authority on learning differences. He has spent
more than thirty years working with kids who struggle to
learn, as well as with their parents and teachers.

©Schwab Learning 2001
Created: 11/26/2001
******************************

Autism & U. S. Airport Travel

Autism & U. S. Airport Travel

November 23, 2001
Port St. Lucie, Florida
By: Dennis Debbaudt

Traveling through airport security will never be the same. Every
traveler passing through a security checkpoint will now encounter
waiting in long lines, producing two forms of picture identification,
mandatory questioning, inspections of personal belongings by strangers,
the increasing likelihood of a light touch by a geiger counter-like
sound producing wand or a complete physical frisk or pat down and the
presence and scrutiny of armed, uniformed paramilitary personnel. The
accompanying sensory-enhancing gauntlet of sounds, lights and touch can
tax the system of any traveler let alone one who has autism. This
experience has quickly become standard operating procedures at U.S.
airports.

People with autism, parents and caregivers may want to consider taking
some extra measures to make passing through a security checkpoint
easier.

As daunting as a security checkpoint is for some children and adults
with autism, consider the point-of-view of the security professional.
The behavior or characteristics of the child or adult with autism may
make the security professional extremely anxious. Consider the reliance
on visual cues and innocent echolalia a person with autism may display,
such as repeating a phrase from a close-by poster. At a security
checkpoint that phrase might included in posted placards that cite the
laws or warn against the use of the words "bomb threat" or "hijacking."
Someone who repeats this phrase would be under suspicion at a security
checkpoint. Those that repeat a question, run or blanche at passing
through a metal detector, or become overanxious when someone attempts to
touch them would also merit extra scrutiny. Left unexplained, the
behaviors and characteristics of some person's with autism may delay
their trip and cause unnecessary scrutiny and anxiety. These are the
types of situations that can easily escalate into physical
confrontations, physical containment and restraint.

As reported in my latest book, Autism, Advocates and Law Enforcement
Professionals, "Those with autism, parents and caregivers may want to
consider carrying autism handout information which would at least
include a basic autism brochure, and a person-specific handout that at
least includes their picture, description, information about behaviors
that security may find suspicious and the best way a security
professional can communicate with or interact with that person. Many
parents find business card handouts that might contain a message such as
'Perhaps my son/daughter's behavior is surprising to you. This is
because he/she has autism', a brief definition of autism, and the phone
number/website address of a local or national advocacy organization."
These are grass roots, one-on-one autism awareness campaigns. Make sure
you carry enough generic information to leave behind. Anyone reading
this message can download the informational handout "Educating the
Community...and Law Enforcement" at www.policeandautism.cjb.net make
copies and hand them out. An expanded version of this handout and more
awareness and educational materials are available in my new book.

If possible, make travel plans well in advance. Call the airlines and
security companies (soon to be mainly federalized) and ask what you can
do to help the security experience go more smoothly for the person with
autism and the security professionals they will interact with. If the
trip has to be made suddenly, arrive extra early, bring plenty of
handouts and explain to the gate agent what your needs are.

Those that have the time may want to inquire with their air carrier
about assistance plans they may offer inexperienced travelers. Northwest
Airlines, for example, offers the Adult Assistance Program for a fee
ranging from $40.00 to $75.00. This may prove to be money well spent.
The program offers personal assistance from check-in, through security
and boarding and through the destination airport. While the program does
not assist with eating, personal hygiene or medication issues, it does
provide assistance through the crucial security checkpoints. Parents and
caregivers of a passenger using travel assist can also pass through
security with their loved even if they are not traveling with them.
Special security passes would be issued in lieu of tickets. A program
like Northwest Airlines' Adult Assistance could be utilized by
caregivers even if they are traveling with a loved one.

Anticipating the worst is never a pleasant proposition. But it's
something we do all the time in our everyday lives when we put on
settles, lock our back doors, pay the life insurance. The downside for
not doing these things is extremely negative in each example. But do we
shudder in fear every time we do these things? Of course not. They are
common sense options associated with everyday life. Taking extra
precautions is also an everyday consideration that those with autism
that can, parents and caregivers also become accustomed to taking. When
traveling through our communities, and airports, taking the
precautions--alerting security, carrying ID and informational handouts,
considering the needs of others, anticipating and considering the
possibilities--can help make our trips and travel a lot safer and a lot
more relaxing. Give yourself at least two weeks to seek the best that
our airlines and airport security can offer. But it's never too late to
alert the airlines and security professionals to a special request for
assistance.

Dennis Debbaudt
ddpi@flash.net
copyright 2001 by Dennis Debbaudt
Written exclusively for the readers of Valerie's List.
Please do not reprint.
Contact author to arrange reprint permission.

(Special thanks to Mike Flotteron of Northwest Airlines for his
assistance in preparing this report. Most major airlines offer programs
similar to the Adult Assistance Program. Check with your air carrier
about services they offer to passengers with disabilities)
******************************

FREE AIRFARE FOR OUT OF STATE MEDICAL APPOINTMENTS

Need to travel out of state with a child or individual with autism? Is the reason for traveling out-of-state because of
a doctor's appointment, surgery, medical treatment, therapy, evaluation, or other? If you can answer yes to these questions then keep reading, one of these airlines may be able to help you. Many of the airlines have made free or reduced air travel available of individuals with autism and other disabilities. Please look below for details.

Please note that international travel is not available at this time through these places listed below. However please watch this site for any updates for international travel airline carriers.

If your child or an individual with autism may be in need of free or reduced travel to medical care, treatment, therapy, or other appointment with a medical professional here are a few of the guidelines:

1. Traveling out of the state in which you live.
2. Can supply proof of appointment.
3. Will supply the airline with name, address, phone, and fax
number of the doctor or medical facility you are to visit
for verification of person name to visit, date and time of
appointment.
4. Willingness to work with the airlines for availability of
flights.
5. Other rules may apply per airline.

If you are willing to agree to these simple terms have them call the airlines listed below to get the paper work started right away. Some airlines have required time allowance of 4-6 weeks before planned travel. Each airline/program have individual policies.

The airlines that offer free or reduced airfare will covers one child and parent free. A second parent or respite worker may be free or half price. Each airline/program have individual policies

NOTE: This is not an advertisement for a airline or any particular group. This information supplied in this page does not reflect any other group or organization offerings.
For More information E-Mail:
AutismAwakening.com
******************************

Seeking Contributors to Book

I'm a journalist based in Sydney, Australia and more importantly, the
mother of a 10 year old boy with severe autism.

Together with Exisle Publishing,I am currently putting together a
collection of stories written by parents of disabled children from
around the world.

The collection, tentatively titled "So Long As Its Healthy", will be
published in the USA, Australia and New Zealand sometime next year.

The aim of the collection is threefold. Firstly,it is designed to
show-case the range of emotions that parents of disabled chidlren
experience in thier everyday lives; their small triumphs, their fears
for the future, their frustrations and so forth. The stories are not
really meant to be about your children, but rather about how YOU feel
as the parent of a special kid.

The book will also enlighten readers about the reality of life with
disbaility and hopefully, offer some comradeship to those parents who
have just received that first,terrible diagnosis.

I'm not necessarily looking for brilliant writing, just people able
to speak creatively from the heart.

Submissions should be around 1000 words, although I suggest you
contact me first for more details before sitting down to write.

This is a labour oflove for me. Accordingly,I'm not receiving any
payment for my work and all profits from the sale of the book will go
to children's charities.

If you'd like more information,I'd be delighted to hear from you.

Please email me at cindy_dowling@hotmail.com

Thank you

Cindy
cindy_dowling@hotmail.com
******************************

Communicative Disorders Clinic (UofM

http://www.umich.edu/~comdis/

The University of Michigan Communicative Disorders Clinic is committed to providing excellent language services to individuals with communication impairments through our Adult and Children's Services programs. In addition, the Clinic provides leadership in expanding the scientific knowledge base of language and language disorders through a vital research program.

The Clinic is located in the Victor Vaughan Building at 1111 East Catherine Street on the Medical Campus at the University of Michigan in Ann Arbor. To find us, please visit the directions page located at this website. To view maps of the area, please visit the University Medical Center Website for local and state maps at www.med.umich.edu.
******************************
Am J Med Genet 1999 Dec 3;87(4):331-8

Treatment of pyruvate carboxylase deficiency with
high doses of citrate and aspartate.

Ahmad A, Kahler SG, Kishnani PS, Artigas-Lopez M, Pappu AS, Steiner R,
Millington DS, Van Hove JL

Department of Pediatrics, Duke University Medical Center, Durham, North
Carolina, USA.

A patient with severe pyruvate carboxylase deficiency presented at age 11
weeks with metabolic decompensation after routine immunization. She was
comatose, had severe lactic acidemia (22 mM) and ketosis, low aspartate and
glutamate, elevated citrulline and proline, and mild hyperammonemia. Head
magnetic resonance imaging showed subdural hematomas and mild generalized
brain atrophy. Biotin-unresponsive pyruvate carboxylase deficiency was
diagnosed. To provide oxaloacetate, she was treated with high-dose citrate
(7.5 mol/kg(-1)/day(-1)), aspartate (10 mmol/kg(-1)/day(-1)), and continuous
drip feeding. Lactate and ketones diminished dramatically, and plasma amino
acids normalized, except for arginine, which required supplementa-tion. In
the cerebrospinal fluid (CSF), glutamine remained low and lysine elevated,
showing the treatment had not normalized brain chemistry. Metabolic
decompensa-tions, triggered by infections or fasting, diminished after the
first year. They were characterized by severe lactic and ketoacidosis,
hypernatremia, and a tendency to hypoglycemia. At age 3(1/2) years she has
profound mental retardation, spasticity, and grand mal and myoclonic seizures
only partially controlled by anticonvulsants. The new treatment regimen has
helped maintain metabolic control, but the neurological outcome is still
poor.
*****************************8
Pediatr Res 1995 May;37(5):675-8

Medium chain acyl-CoA dehydrogenase deficiency in Pennsylvania:
neonatal screening shows high incidence and
unexpected mutation frequencies.

Ziadeh R, Hoffman EP, Finegold DN, Hoop RC, Brackett JC, Strauss AW, Naylor EW
Department of Human Genetics, University of Pittsburgh, Pennsylvania, USA.

Medium chain acyl-CoA dehydrogenase deficiency (MCAD) is a defect in the
mitochondrial oxidation of fatty acids. The disorder typically presents with
episodes of vomiting and hypoglycemia, sometimes with changes in mental
status and hepatic failure. These Reye's-like features may culminate in coma
and death. Stress, intercurrent illness, and reaction to childhood
immunization have been shown to precipitate acute metabolic episodes in MCAD
patients. All cases are caused by mutations of the single MCAD gene on
chromosome 1. Most clinically ascertained cases are caused by an A985G
transition in exon 11. Here we report the preliminary findings of MCAD
patients detected prospectively through a supplemental newborn screening
program in Pennsylvania using tandem mass spectrometry. From the first
80,371 newborns screened we prospectively found nine babies with MCAD
(1/8930) plus two additional newborns screened because of a previously known
family history. Molecular analysis showed 56% of the detected patients to be
compound heterozygotes for the A985G and a second mutation. This is in
contrast to clinical retrospective studies which have found only 20% to be
compound heterozygotes. We have identified two of the other mutations
including a novel mutation (DG91/C92, 6-bp deletion) in one of our patients
by using single-stranded conformation polymorphism (SSCP) and sequence
analysis of conformers. Our results confirm that MCAD is one of the more
common inborn errors of metabolism. The different mutation frequencies
observed between retrospective clinical studies and our prospective newborn
screening study suggest that clinical ascertainment may lead to preferential
identification of the A985G mutation.
**********************
J Inherit Metab Dis 1999 Jun;22(4):381-91

Glutaric aciduria type I:
from clinical, biochemical and molecular diversity

to successful therapy.

Hoffmann GF, Zschocke J

Department of Neuropaediatrics and Metabolic Diseases, Philipps University,
Marburg, Germany.

The biochemical hallmark of glutaric aciduria type I (GA I) due to
glutaryl-CoA dehydrogenase deficiency is the accumulation of glutaric acid,
and to a lesser degree of 3-hydroxyglutaric and glutaconic acids. Abnormal
metabolites vary from gross organic aciduria to only slightly or
intermittently elevated or even normal excretion of glutaric acid, making the
diagnosis sometimes difficult. Close to 100 pathogenic mutations have been
identified in the gene encoding glutaryl-CoA dehydrogenase. Specific
mutations correlate with low or no excretion of glutaric acid, but there
appears to be no correlation between genotype and clinical phenotype. GA I
causes unique age- and location-specific neuropathological sequelae.
Starting in the second half of gestation, maturation of the frontal and
temporal cortex is hindered, leading to the characteristic appearance of
frontotemporal atrophy. Between 6 and 18 months of age, relatively mild
neurological symptoms may become exacerbated by fever or a catabolic state in
the course of common infections or routine immunizations, by fasts required
for surgery, or by minor head injuries. Putamen and caudate are destroyed,
resulting in a permanent movement disorder that is similar to cerebral palsy
and ranges from extreme hypotonia to choreoathetosis to rigidity with
spasticity. Recently, the underlying pathophysiology could be delineated to
an environmentally triggered age- and location-specific overstimulation of
the NMDA 2B receptor subtype. Current therapy prevents brain degeneration in
more than 90% of affected infants who are treated prospectively. Without
treatment, more than 90% of affected children will develop severe
neurological disabilities. Recognition of this disorder before the brain has
been injured is essential to treatment. GA I may be recognized in routine
neonatal screening performed with tandem mass spectrometry by an elevation of
glutarylcarnitine. Where this is not done, timely diagnosis depends on the
recognition of relatively nonspecific physical findings such as hypotonia,
irritability, macrocephaly, on the detection of suggestive abnormalities in
neuroimaging and on quantitative urinary organic acid analysis by gas
chromatography--mass spectrometry.
******************************

Brain 'Asymmetry' Works for Reading Skills

By Nancy A. Melville
HealthScoutNews Reporter

SATURDAY, Nov. 17 (HealthScoutNews) -- Asymmetry may suggest an
imperfection or misalignment, but when it comes to the right and left
sides of the brain, the variations appear to have an important role
in children's reading and verbal skills.

Language and reading abilities are known to be associated with the
left side of the brain, and, as seen in many matching parts of the
body, a natural asymmetry is normal, with the left side being
slightly larger.

According to a new study, that extra space may pay off in language abilities.

The study, published in a recent issue of the journal Child
Development, found that children with greater symmetry between the
two sides of the brain don't perform as well on reading-skill tests
as those with the more-common asymmetry between the two sides.

The finding was based on study of 39 sixth-graders in Florida. The
children were given magnetic resonance imaging (MRI) scans, then
tested for a variety of reading abilities, including pronouncing
unfamiliar words, determining missing words in a paragraph and
reordering nonsense syllables into words.

The researchers found that children whose MRIs showed more symmetry
between right and left sides of the brain didn't do as well on the
tests as those who displayed asymmetry.

In addition to examining the MRIs and the tests, the researchers
also considered the socio-economic status of the students, because
children from low-income families often have poor reading and verbal
skills.

Although kids from low-income families did indeed perform more
poorly on the reading tests and low-income kids who had little
asymmetry showed the weakest mastery of language, overall the kids
with less brain asymmetry had consistently lower reading scores,
regardless of income levels.

And those from lower income families had no greater levels of brain
symmetry than children from other income levels.

"There were two main findings," says lead study author Mark A.
Eckert, an instructor in the department neuroscience at the
University of Florida's McKnight Brain Institute. "One is that brain
asymmetry predicted the children's verbal ability, and the other was
that it was true in both economic groups."

Eckert speculates that because the language facilities are known to
reside, for the most part, in the left side of the brain, those who
have more symmetrical brains, and hence smaller left sides, may be at
a language disadvantage.

"It may be that if you have this reversed asymmetry, your language
isn't completely lateralized to the left hemisphere and you might not
be as good at processing oral language as other people," he says.

Interestingly, the researchers also found that the correlation
between reading ability and brain asymmetry only applied to
right-handed participants. Eckert says the patterns were not as clear
in left-handed people.

"In our studies, we frequently see relations between the asymmetry
and verbal ability of right-handers, but that relationship is
sporadic in left-handers" he says.

Eckert says that before brain symmetry is even considered as a
factor to look at in children with learning problems, research must
be done to find out what kinds of intervention could help these
children.

Child development expert Dr. Jean Berko Gleason, a professor of
psychology at Boston University, says that regardless of the size or
shape of a child's brain, early intervention can almost always help
with reading and verbal skills.

"I don't think you can draw the conclusion that you're predestined
to be a good or bad reader, because it's conceivable that early
language experience can indeed contribute to the development of your
brain," she says.

"If people are reading to you and talking to you, and you have a lot
of linguistic experience from your earliest years, there's no reason
not to assume that your brain wouldn't develop to represent the
experiences you have."

Early experiences of being regularly read to and spoken to can have
a powerful impact on not only reading skills later in life, but even
on the physical development of the brain, Gleason adds.

"You have a period in early development where there is an enormous
proliferation of neurons in the brain and then there is a pruning of
those neurons to represent what your experiences have been," Gleason
explains.

Those experiences profoundly shape the development of the brain,
regardless of the amount of asymmetry between left and right sides,
she adds.
******************************

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