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Early Detection
Read information regarding how to detect first signs of possible autism spectrum disorders. A comprehensive review is found on the First Signs website at: www.firstsigns.org.
Watch videos available on the Autism Speaks website to help you detect red flags or diagnostic features that your child may exhibit. Visit: http://www.autismspeaks.org/video/glossary.php
If your child is 2 years old or younger:
Contact your local Early Intervention Agency for an evaluation (www.utahbabywatch.org). These agencies are government-funded and serve all eligible infants and toddlers who have developmental delays and/or disabilities. They conduct a wide variety of tests to determine the strengths and challenges the child is experiencing, then, if the child qualifies, the team develops an Individual and Family Service Plan (IFSP), which gives service delivery.
Complete a developmental checklist such as the Communication and Symbolic Behavior Scales Developmental Profile Infant/Toddler Checklist available free from the First Words Project (http://firstwords.fsu.edu/toddlerChecklist.html) and discuss it with your child's pediatrician. This Checklist is used by pediatricians, parents, or childcare providers as a screening instrument to decide if a communication evaluation is needed for infants/toddlers. It is available in several languages.
If your child is between 16 - 30 months of age, you may want to complete the Modified-Checklist for Autism in Toddlers (M-CHAT) and go over the results with your pediatrician.
If your child is 3-4 years old:
Contact your local Early Childhood Special Education program. Each school district has a program for preschoolers with developmental delays or disabilities (ages 3 -5). Early Childhood Special Education professionals will work with you to evaluate your child's development and determine whether he/she is eligible for a free appropriate public education under the Individuals with Disabilities Education Act (early childhood special education and/or related services). If your child is eligible for services, the team will develop an Individualized Education Program (IEP) which will determine what services your child will receive.
If your child is 5 years or older:
Contact your local school district, which will have a program for students with disabilities ages 5-22. A multidisciplinary team of professionals will work with you to evaluate your child's strengths and weaknesses and determine whether he/she is eligible for a free and appropriate public education under the Individuals with Disabilities Education Improvement Act (special education and/or related services). This team will not provide a diagnosis; they will provide an "educational classification" of autism for those who meet the educational definition, whose autism negatively impacts education, and who require specialized instruction. The team may also refer you to a child psychologist, psychiatrist, neurologist, or other medical professional for a diagnostic evaluation. |
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Evaluation and Treatment
Obtain diagnostic testing and/or assessment: Make an appointment to see a child psychologist, psychiatrist, neurologist, or other medical professional who specializes in diagnosing children with Autism Spectrum Disorders (ASD). This may be the physician that your local early intervention, early childhood, or special education program has referred you to, or it may be a physician referred by a friend, family member, or another parent of a child with ASD. These assessment services may be provided by private or government-funded professionals (such as Valley Mental Health www.vmh.com and Wasatch Mental Health www.wasatch.org). For a list of several diagnosticians in Utah, visit: www.utahparentcenter.org. To access detailed information about the diagnostic process and other resources, visit the Utah Medical Home Portal online at www.medhomeportal.org.
Along with testing for the symptoms of an Autism Spectrum Disorder, the diagnostic testing should include: |
| |
a. |
Full neurodevelopmental evaluation,
including testing to rule out genetic disorders such as Fragile X, Rett’s
Syndrome |
| b. |
Social skills assessment |
| c. |
Communication assessment (receptive/expressive language and social language) |
| d. |
Adaptive behavior assessment |
| e. |
Hearing screening |
| f. |
Occupational
therapy evaluation (fine/small motor skills) |
| g. |
Physical therapy evaluation (gross/large
motor skills) |
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If your
child is diagnosed with an Autism Spectrum Disorder, obtain a 100-Day Kit from Autism Speaks. The
100 Day Kit includes basic information about autism and dealing with the news
of a diagnosis. The personalized kit lists local service providers, support
groups, recreational activities, sources of legal information, conferences,
local autism and disability organizations and information about the local
chapter of Autism Speaks. It provides insight into getting services for a newly
diagnosed child and explains various available treatment options. A
week-by-week action plan helps walk a family through the steps it needs to take
to ensure that it is on the right track. The kit also includes a glossary of
terms associated with autism, as well as a safety plan and a list of
recommended books and informational web sites. The kit can be accessed at: http://www.autismspeaks.org/press/100_day_kit.php |
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Obtain the DVD My Next Steps: A Parent's Guide to Understanding Autism, or view the videos at http://depts.washington.edu/uwautism/video/video.html to learn techniques for engaging your child and working with your school system. |
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Solicit help and support from family, friends, and autism support groups. Several support groups exist to assist parents through the evaluation, diagnosis, and treatment processes. These support groups may function by holding regular meetings, providing telephone support, or communicating electronically. Support groups may be found by contacting the Utah Parent Center at (800) 468-1160, (801) 272-1051, or by visiting http://www.utahparentcenter.org/resources_autism.htm. |
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Create a filing system for compiling important information and documents
(e.g., personal documentation, developmental milestones, diagnostic history, education history, social skill development). For example, Record Book for Individuals with Autism Spectrum Disorders by Wheeler, M., & Pratt, C. (2000). Bloomington: Indiana: Indiana Institute on Disability and Community. Available from (812) 855-6508 or http://www.iidc.indiana.edu/irca/fpublications.html. Include information about what your child likes/dislikes, how he/she is motivated, and his/her strengths and interests. Sahre this document with your service providers. |
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Contact
the Division of Services for Persons with Disabilities (DSPD). DSPD intake
workers will evaluate your child for eligibility for their home and
community-based services such as community living, day services, supported
employment services, and support for people with disabilities and their
families. There is a waiting list to access these services, so it is
recommended that you contact them shortly after receiving the diagnosis. Visit www.dspd.utah.gov. You may obtain
assistance with completing paperwork for needed supports contacting the Disability
Support Center
for Families (www.disabilitysupportcenter.org).
They also provide information and referral assistance, parent trainings and
support groups, and Spanish interpreters. |
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Apply for
Social Security and Supplemental Security Income. The Social Security and
Supplemental Security Income (SSI) disability programs are Federal programs
that provide assistance to people with disabilities. While these two programs
are different in many ways, the Social Security Administration administers both
and only individuals who have a disability and meet medical criteria may
qualify for benefits under either program.
SSI is a federal program that provides monthly cash payments to people in need.
SSI is for people who are 65 or older, as well as for people with disabilities
of any age, including children. Visit www.ssa.gov or call (800-772-1213 |
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Videotape
your child. Many parents have found that reviewing videotapes of their
child with service providers assists in the diagnostic process. It also serves
to show progress over time.
|
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Review
various service delivery options.
| a. |
Publicly-funded treatment. Your local publicly-funded
agency (early intervention, early childhood special education, K-12+ special
education in both district and charter schools) will provide services based
upon an Individualized Family Service Plan (IFSP; 0-3 years) or an Individualized
Education Program (IEP; 5-22 years), a legal document which outlines the
services they will provide. The IFSP also outlines goals determined for the
child and his/her family. |
| b. |
Private treatment. You may consider
contacting a private agency which serves infants, toddlers, and children with ASD.
These agencies charge fees for their services, often on a sliding-scale, based
upon family income. Check with your health insurance provider to ascertain
whether they cover treatments for children with autism.
Know that you can supplement your
publicly-funded treatment with private treatment. Some families choose to fund
speech therapy, home-based programming, community-based training, and other
services beyond what the school provides. Furthermore, consultation groups
exist which help coordinate services, serve as advocates in school or other
meetings, and they may also provide direct services to families.
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|
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Review
various treatment options
| a. |
The
Autism Society of America webpage includes information regarding various
treatment options:
http://www.autism-society.org/site/PageServer?pagename=life_treat
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| b. |
Guidelines
for effective treatment can be found at: http://www.autismcouncilofutah.org/treatmentoverview.htm |
| c. |
Common
Educational Treatments (see descriptions of these treatments at http://www.autismspeaks.org/whattodo/index.php#aba;
Also, see the Autism Society of America webpage for a discussion regarding
educational issues: http://www.autism-society.org/site/PageServer?pagename=life_edu)
| - |
Applied Behavioral Analysis (ABA) |
| - |
Floortime
(Greenspan’s Developmental Process) |
| - |
Picture
Exchange Communication System (PECS) |
| - |
Relationship
Development Intervention (RDI) |
| - |
The SCERTS®Model |
| - |
Social
Skills Training (e.g., Social Stories) |
| - |
Structured
Teaching (TEACCH; Training and Education of Autistic and
Related Communication Handicapped Children) |
| - |
Verbal Behavior
Intervention |
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| d. |
Common Therapies
| - |
Speech/Language Therapy |
| - |
Occupational Therapy (Sensory Integration) |
| - |
Physical Therapy |
| - |
Auditory Integration Therapy |
| - |
Relaxation Therapy |
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| e. |
Common Health Care Treatments
| - |
Nutrition/Dietary: Wheat/Milk Free Diets, Vitamin/Mineral Supplements, Biomedical Treatment through a DAN! (Defeat Autism Now) practitioner |
| - |
Psychopharmacological |
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Determine
which treatments are available in your area, most viable and beneficial given your unique family
situation, your child’s circumstances, and medical/psychological testing.
Autism
Source is the Autism Society of America's on-line referral database of
autism related services and supports. Autism Source is free, searchable by
location or service type, and provides resource listings throughout the
United
States
. Listings include: many types of
service providers, ASA Chapters, support groups, medical professionals,
educational facilities, legal services, government
agencies, research centers, and more. Available at: http://www.autismsource.org/.
You can also access resources
available in Utah by visiting the
Autism Council of Utah: www.autismcouncilofutah.org. |
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Take an online introductory course such as the Autism 101 course sponsored by the Autism Society of America (http://www.autism-society.org/site/PageServier?pagename=course).
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Learn about the law and your rights in your child’s education. If your child is being served by a publicly-funded organization, they will give you a document detailing your “Parents’ Rights.” This may be a lengthy document accompanied by a brief summary. You may also access information about education law at sites such as: www.wrightslaw.com. Also, the Utah Parent Center provides one-on-one consultations, workshops, trainings, and information (800-468-1160) or (801) 272-1051 or www.utahparentcenter.org. |
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Implement
as quickly as possible, observing one intervention at a time to measure
effectiveness. |
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Collaborate
with professionals to monitor and evaluate progress by taking careful notes
and daily logs of behavior to discern which interventions are providing the
best results. Collaborate with agency/school personnel (e.g., teacher,
physician, psychologist, speech-language pathologist) to compare how your child
is doing. Work together to help your child transfer or generalize skills across
different environments, people, materials, time of day, and instructional cues. |
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Make
necessary changes in your child’s treatment plan for optimal response. |
Don’t get
discouraged! Getting a diagnosis of autism for your child can change your family’s
life. Many parents have experienced the stages of grief while going through the
diagnostic and treatment process: denial, bargaining, anger, depression, then
acceptance. Realize that this is a
marathon, not a sprint. Take care of yourself and your other family members,
and let others help you for the benefit of your child and your family.
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