Autism-What to do the first year - Autism Society of Greater Phoenix

Autism: Finding Success the
First Year
By Katie Wride,
ASA-GPC Parent Mentor
What do I do first?
1 - Join a support
group in your area
-Online, in-person, Parent Mentors
2 - Get a diagnosis
3 - Contact DDD/ALTCS
4 – Contact your
school district
5 – Learn:
- By reading books and websites off of
suggested reading lists
- By attending local or natl. conferences
6 – Find local Doctors
(See co-morbid conditions)
7 – Begin therapies
(Agency and Parent-led)
8 – Find time for yourself
1- Join a Support Group
We are partnering with EVAN (East Valley Autism Network) and ABC(Autism Biomedical Connections) for this meeting each month
TIME: 7-9pm
WHEN: 4th Tuesday of each month
WHERE: Mi Amigo’s Mexican Restaurant-1264 S Gilbert Rd, Mesa, 85204
TIME: 6:30 to 8:00pm
WHEN: 3rd Wednesday of the month
WHERE: Paradise Valley Community Center-17402 North 40th St. Phoenix, 85032
We are partnering with Shelly Vincant’s West side group for this meeting.
TIME: 7-9 PM
WHEN: 2nd Monday of each month
WHERE: New Life Community Church-8155 W. Thunderbird Rd., Peoria, 85381
Mom’s Meet Up
WHEN: Friday from 9:30 to 11:00 AM
WEST VALLEY: Wildflower Bread Company at Arrowhead Gateway17530 N. 75th Avenue Glendale, 85308
NORTH VALLEY: Paradise Bakery at Desert Ridge, 21001 N. Tatum Blvd., Suite 48-1520 Phoenix, 85050
EAST VALLEY: Barnes and Noble at San Tan Village, 2150 East Williams Field Rd #105 Gilbert, 85295
2 - Get a Diagnosis
You will need an Autism diagnosis (or an
at risk for Autism before age 6) from a
licensed psychologist or developmental
pediatrician. (See Doctors who diagnose
2 – Get a diagnosis – Some
Doctors that diagnosis
Joseph A. Gentry, Ph.D., BCBA
Chris Nicholls, PhD, ABPdN
Telephone number is 480-998-2303
Hoard, Cynthia E. EdD
Michael LeVoie at Phoenix Children's Hospital
Sharon McDonough-Means
Developmental & Educational Psychological Services
(480) 659-5563
Contact: Carol McLean, Ph.D. Clinical Child Psychologist
Logerqist, Sally J. PhD
Natasha Hill
Dr. Alan Wexler
Val Vista and the US 60
Dr. Astrid Heathcote
480-275-2249 in Awahtukee
Christina K. Lebovitz, Ph.D
(480) 368-9898
E-mail: [email protected]
Programs in Developmental and
Behavioral Pediatric Center
Developmental Evaluation Clinics,
St. Joseph's Children's Health
Tel: (602) 406-3543
Contact: Dr. Daniel Kessler,
Dr. Karlsson Roth, Ph.D., Ltd.
Tel: (602) 863-0101
Dr. Jan Blackham, PhD
Phoenix Children’s Hospital
Lanie Y. Zigler. Ph.D., Neuropsychology
(602) 996-1396; (602) Email:
[email protected]
Web :
Melmed Center
Tel: (480) 443-0050
Web site:
3 – Contact DDD/ALTCS
1. First - Contact DDD at:
 Arizona Department of Developmental Disabilities
- Visit the Navigating the system guide at:
Arizona Early Intervention Program for children 0-3
years old
3 – Contact DDD/ALTCS
In order to be eligible for DDD you must:
1- Be a resident of Arizona
2- Be at risk of having a developmental disability
(before the age of 6); after the age of 6 you must
have a diagnosis of : epilepsy, cerebral palsy, Autism,
or cognitive disability
3- Must be diagnosed before the age of 18
4- Must have functional limitation in 3 of 7 major life
areas: Self-care, receptive/expressive language,
learning, mobility, independent living, self-direction
Division of Developmental Disabilities District Offices
Central Administrative Office
1789 W. Jefferson St. Phoenix, AZ 85007
602.542.0419; 866.229.5553
Health Care Services - 2200 N. Central Ave., 207 Phx, AZ 85004
602.238.9028; 800.624.4964
DISTRICT VIII (ATPC) 2800 N. Hwy. 87 Coolidge, AZ 85229-1467
Central Office: 1.866.229.5553
District I: 1.800.749.9490
District II: 1.877.739.3943
District III:
Flagstaff: 1.888.289.7177
Chinle: 1.866.560.8325
Show Low: 1.888.537.8013
Window Rock: 1.800.770.6493
Prescott: 1.888.289.2003
Tuba City: 1.866.283.4520
District IV: 1.877.739.3922
District V:
Globe: 1.877.227.1100
Apache Junction: 1.877.739.3926
ATPC: 1.877.739.3941
District VI: 1.877.739.3938 x5625
District Administrative Office*
4000 N. Central St., Ste. 900 Phoenix, AZ 85012
*Intake 3 years old and over
Camelback Office - 2001 W. Camelback Rd. Ste. 170
Phoenix, AZ 85012
Dobson Office - 163 N. Dobson Rd. Mesa, AZ 85201
McKinley Office - 1824 E. McKinley St. Phoenix, AZ 85006
Indian School Office (Intake 0-3 years - 1430 E. Indian
School Rd., Ste. 205 Phx, AZ 85014 602.277.8724
Mesa Office - 1619 E. Main St. Mesa, AZ 85203
Metro Office - 11225 N. 28th Dr. C-207 Phoenix, AZ 85029
North Office - 14040 N. Cave Creek Road Phoenix, AZ 85022
South Office - 2602 S. 24th St., Ste. 108 Phoenix, AZ 85034
Southwest Office - 3802 N. 53rd Ave., #250 Phoenix, AZ
Tempe Office - 5038 South Price Road #114 Tempe, AZ
Gilbert Office - 2288 W. Guadalupe Rd. Gilbert, AZ 85323
Avondale Office - 290 E. La Canada Blvd. Avondale, AZ
85323 623.925.5270
Surprise Office - 11526 W. Bell Rd. Surprise, AZ 85374
3 – Contact DDD/ALTCS
2. Second - contact Arizona Long Term Care to qualify for federal funding
for services:(ALTCS)
602-417-6600 –Phx office; 602-417-6400- Mesa office
-You will first have a financial interview over the phone to make sure that your
child does not have more than $2000 in his/her name to qualify.
-Next you will have an interview to determine if your child is at risk for
institutionalization. The interviewer will ask you questions from the PAS tool and
you will need 40 points to qualify for services.
-Contact an ASA-GPC Parent Mentor to help you through this process.
-Arizona’s Health Care Cost Containment System AHCCS (state medical
4 - Contact your school district
In order to get appropriate services for your child in school, contact your
local school district and ask in writing for a complete Educational
evaluation to be completed on your child. They will have 60 days to
evaluate your child.
To find your school district look up Arizona Department of Education
at: or call 602-542-5393
Once your child is evaluated for Special Ed services you will have an IEP
meeting to determine goals and what placement is appropriate for your
child’s needs.
For more information on IEP’s and Special Education Law visit:
4 – Contact your school district
Here is a list of the PINS (Parent Information Network Specialists) in our area:
Gila, Pinal
Amy Dill
(480) 759-1029
Maricopa - West
(623 Area Code)
Jill Castle
(480) 699-0067
Maricopa - East
(480 Area Code)
Barbra Ross
(480) 607-3030
Maricopa - Central
(602 Area Code)
Holly Reycraft
(480) 726-7205
PINS are consultants who provide on-site and phone consultation, training, resources,
and information and referrals to support parents of special education students.
5 - Learn
Where to go for help or for more information
Arizona Center for Disability Law: Advocates for the legal rights of persons with disabilities
* to be free from abuse, neglect and discrimination
* to have access to education, health care, housing and jobs, and other services in order to maximize independence
and achieve equality
Visit: Phoenix: (602) 274-6287
Arizona's Advocates:
Assisting families in reaching the high expectations for your child and supporting successful navigation of the
educational system to get the appropriate services and placement. These are experienced advocates here to help you
gather information, understand the rules of the special education process, and to support you to plan and prepare for
meetings. We bring knowledge, experience, and expertise to your child's educational meetings. (602) 471-0346
Autism Society of America- Great Phoenix Chapter’s Parent Mentors
Call Cynthia Macluskie: (480) 940-1093 or [email protected]
Call Susan Sunseri: (602) 312-4997 or [email protected]
Katie Wride: (602) 295-8062 or [email protected]
Raising Special Kids : a non-profit organization of families helping families of children with disabilities and
special health needs in Arizona. All programs and services are provided to families free of charge. At all
ages and stages of a child's development, Raising Special Kids supports parents through Parent-to-Parent
programs, Special Education information, individual IEP consultation, training, and problem-solving
support. Contact them at (602) 242-4366 or
Arizona Governor's Council on Developmental Disabilities
Works to build bridges, increase understanding and create opportunities to banish misconceptions and change public
Autism Book List
These are some recommended book resources for families affected
by autism.
General Information
 Beyond the Wall – Stephen Shore
 Thinking in Pictures – Temple Grandin
Ten Things Your Child with Autism Wishes you Knew- Ellen
Autism Spectrum Disorders from A to Z – Barbara Doyle
Top Ten Tips: A Survival Guide for Families with Children on
the Autism Spectrum -Teresa A. Cardon
Visual Strategies for Improving Communication – Linda
The Child With Special Needs: Encouraging Intellectual and
Emotional Growth - Stanley Greenspan
Autism Book List
These are some recommended book resources for
families affected by autism.
Early Intervention / Applied Behavorial Analysis (ABA)
Right From the Start - Behavioral Intervention for Young Children with Autism
Sandra Harris & Mary Jane Weiss - 1998
Let Me Hear Your Voice - A Family’s Triumph over Autism-- Catherine Maurice
Teaching Developmentally Disabled Children - The Me Book - O.Ivar Lovaas
Behavioral Intervention for Young Children with Autism, Maurice, Green &
Unraveling the Mystery of Autism and Pervasive Developmental Disorders,
Biological Treatments for Autism & PDD, William Shaw, MD, 2003, 2nd Edition
Biomedical Treatments
Karyn Seroussi, 2000
IEP / School Districts & Legal Issues
The Complete IEP Guide: How to Advocate for Your Special Education Child Lawrence Siegel, 2007 ed
You’re Going to Love this Kid: Teaching Students with Autism in the Inclusive
Classroom-- Paula Kluth
Wrightslaw: From Emotions to Advocacy, 2nd Edition --Pam Wright & Pete
5 - Learn – From Websites (SCD)
6 – Find Local Doctors
Learn the co-morbid conditions and the
specialists in the valley that will rule
these out (See co-morbid presentation)
 Seizure Disorders
 Gastrointestinal Disorders
 Immune Deficiency and Dysfunction
 Hypothyroidism
 Mitochondrial Disorder or Dysfunction
7 – Begin Therapies
Even before you are approved for therapies
through the state, check your insurance
company to see if they cover OT, Speech,
and Physical therapy for your child. Contact
the ASA-GPC Parent Mentors or the Autism
Resource Guide From ASA-GPC coming at the
end of the summer for a recommended list of
agencies that provide these therapies.
Once approved through the state, often you will
receive OT, Speech, Physcial, & Music
therapies as well as Habilitation and Respite.
7 – Begin Therapies
Therapies for Autism
Educational/behavioral therapies are often effective in
children with autism, with Applied Behavioral Analysis (ABA)
usually being the most effective. These methods can and
should be used together with biomedical interventions, as
together they offer the best chance for improvement.
Parents, siblings, and friends may play an important role in
assisting the development of children with autism. Typical
preschool children learn primarily by play, and the
importance of play in teaching language and social skills
cannot be overemphasized. Ideally, many of the techniques
used in ABA, sensory integration, and other therapies can be
extended throughout the day by family and friends.
7 – Begin Therapies
Applied Behavior Analysis:
Many different behavioral interventions have been developed for children with
autism, and they mostly fall under the category of Applied Behavioral Analysis
(ABA). This approach generally involves therapists who work intensely, one-onone with a child for 20 to 40 hours/week. Children are taught skills in a simple
step-by-step manner, such as teaching colors one at a time. The sessions
usually begin with formal, structured drills, such as learning to point to a color
when its name is given; and then, after some time, there is a shift towards
generalizing skills to other situations and environments. A study published by
Dr. Ivar Lovaas at UCLA in 1987 involved two years of intensive, 40-hour/week
behavioral intervention by trained graduate students working with 19 young
autistic children ranging from 35 to 41 months of age. Almost half of the
children improved so much that they were indistinguishable from typical
children, and these children went on to lead fairly normal lives. Of the other
half, most had significant improvements, but a few did not improve much. ABA
programs are most effective when started early, (before age 5 years), but they
can also be helpful to older children. They are especially effective in teaching
non-verbal children how to talk. Parents are encouraged to obtain training in
ABA, so that they provide it themselves and possibly hire other people to assist.
Qualified behavior consultants are often available, and there are often
workshops on how to provide ABA therapy.
7 – Begin Therapies
Speech Therapy:
This may be beneficial to many autistic children, but often only 1-2
hours/week is available, so it probably has only modest benefit unless
integrated with other home and school programs. Sign language and
PECS may also be very helpful in developing speech.
Occupational Therapy:
This can be beneficial for the sensory needs of these children, who
often have hypo and/or hyper sensitivities to sound, sight, smell,
touch, and taste. Many autistic individuals have sensory problems,
which can range from mild to severe. These problems involve either
hypersensitivity or hyposensitivity to stimulation. Sensory integration
focuses primarily on three senses — vestibular (i.e., motion, balance),
tactile (i.e., touch), and proprioception (e.g., joints, ligaments). Many
techniques are used to stimulate these senses in order to normalize
Physical Therapy:
Often children with autism have limited gross and fine motor skills, so
physical therapy can be helpful.
7 – Begin Therapies
Auditory Interventions:
There are several types of auditory interventions. The only one with
significant scientific backing is Berard Auditory Integration Training
(called Berard AIT or AIT) which involves listening to processed music
for a total of 10 hours (two half-hour sessions per day, over a period of
10 to 12 days). There are many studies supporting its effectiveness.
Research has shown that AIT improves auditory processing, decreases
or eliminates sound sensitivity, and reduces behavioral problems in
some autistic children. Other auditory interventions include the Tomatis
approach, the Listening Program, and the SAMONAS method. There is
limited amount of empirical evidence to support their efficacy.
Information about these programs can be obtained from the Society for
Auditory Intervention Techniques’ website
Relationship Development Intervention (RDI):
This is a new method for teaching children how to develop
relationships, first with their parents and later with their peers. It
directly addresses a core issue in autism, namely the development of
social skills and friendships. Website:
A few agencies in the valley
that provide therapy:
Affinity Family Care -
Arion Care Solutions -
Arizona Autism United (AZA United):
Baio Enterprises –
Boulder Mt Therapy -
Center for Autism and Related Disorders, Inc. (CARD)
Coester Cares Therapy Services, LLC
Guthrie Mainstream -
HOPE Group -
Lauren's Institute for Education (L.I.F.E.)
Pediatric Language & Speech
PlayABA -
S.E.E.K. Arizona -
8 – Make Time for Yourself
Be sure to use respite (babysitters) to get out and do
the things you loved before you entered on the
Autism journey.
Remember that marriage support is key-(Over 85% of
marriages of parents of children with Autism end in
Remember your other children – they need your love
and attention too.
Be sure to have a hobby of your own, exercise, and
even read for pleasure!
Even though there is a lot to handle with a child with
Autism, you have to remember that this is a
marathon and not a sprint.
HOPE- Never Give Up!
You must never forget that there is hope, even when
others may say there is not. With treatments like
biomedical interventions, ABA, RDI, AIT, etc. children
with Autism are getting better and recovering skills
many never thought possible. YOU CAN DO IT!
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