What can you expect at an assessment for an ASD or PDD? Here is what I experienced.
I started voicing my concerns to our pediatrician when my son was three months old, but it took until he was fifteen months old, with me practically screaming at her before she paid attention and starting referring us elsewhere.
May '97: The first test we had was a hearing test. Since my son was so young (and no communication whatsoever), the test consisted of noises coming from different parts of a padded room at different frequencies. When he turned his head in the direction of the sound, a toy would appear and give some time of visual/auditory reward. We went back three times and got conflicting reports each session. The diagnosis coming out of those tests was: Possible Developmental Delay.
July '97: We were next sent to a developmental pediatrician who stared at him for fifteen minutes, then questioned us for about a half hour. Her written diagnosis was: Mild PDD.
August '97: The next stop was a Pediatric Neurologist, who after about 10 minutes of questions and taking head measurements, pronounced "I don't think he's autistic." (Joy to the World!) Diagnosis: A good-looking boy with a speech delay (remains by far my favorite diagnosis).
August '97: Early Intervention interview. They couldn't give a diagnosis, but took us on in a big hurry! The supervisor did not disagree with me when I told her I believed he had autism.
January '98: Back to the neurologist. Diagnosis "I still don't think he is autistic"
January '98: A team of developmental pediatricians, occupational therapist, speech-language pathologist and social worker assessed him. They questioned us and stared at our son for about 3 hours. No standardized testing done. Diagnosis: Global Developmental Delay with possible autistic tendencies.
January '98: Psychologist and psychometrist. 3 - 4 hours using all sorts of tests and measurements that had not been used before to test my son. I later found out they were standardized tests. Diagnosis: Severe Autism, Severe Developmental Delay (a.k.a. mentally retarded).
In retrospect, my son was very obviously affected by autism at an early age, yet no one would diagnose it properly.
The assessment is very important. Be sure to always ask for a written copy, because it is a tool with a few uses. One is to determine what needs to be taught to the child. A good assessment will include gaps in the child's cognitive abilities. From there, you can write (or, more appropriately, have a psychologist write) a good behavioral program. It is also important to keep these assessments (even those you don't agree with) to use for funding and services.
A co-existing disorder (like developmental delay) might throw you. Be aware that 75% of children with autism have a developmental delay (ie. speech delays). About 1/3 of ASD kids have (or develop) seizure disorders, many of which are addressed in this website. Sometimes, it takes a few years to diagnose these co-disorders because the autism could be masking the other symptoms. Try to look upon this as a piece of the puzzle. For example, if your child is seizing (and with absence or petit mal seizures, it can be next to impossible to see them), the proper medication can help your child with social, communication, cognitive, behavioral and other issues. The seizures interrupt your child's learning process. So the co-existing disorder can actually be a good thing. Additionally, some of these disorders can get you more help, services and funding.
Things to remember:
Ask for and keep all copies of assessments (even those you disagree with).
Don't be afraid to ask questions.
Expect the assessment to be long and tiring.
Ask if standardized testing will be done, and which tests will be performed.
Ask up front for any costs.
Best assessments are conducted by a team of professionals. Ask who will be involved.
Check out our workshop notes from "Diagnostics and Testing"
If a psychologist is conducting the assessment, your child should be seen by this psychologist at some point, not just by practicum students.
If your child is in a challenging mood, advise the tester, but don't be surprised if they attempt to continue the test. This is not a bad thing as the tests are designed so that your child's mood should not effect the outcome. Also, in terms of services and funding, it is better that your child is over- rather than under- diagnosed. No matter how mild or severe your child's autism is; no matter whether s/he has PDD-NOS, Asperger's Syndrome, or autism - treatments are the same. These treatments should be tailored to the child, anyway - but therapies such as the ones described in our "Autism Interventions" section or the issues of the E-News (part one and part two) apply to all within the spectrum.
Ask for a list of resources for your child, your self and your family.
Be aware of a "PDD" diagnosis! In itself, PDD is not a proper diagnosis (although PDD-NOS is), ask the tester if they can be more specific and tell you which PDD your child has.
Be aware that an honest doctor and a thorough diagnosis is what you need to receive everything your child requires. It may be nice to hear your child is "a good looking boy with a speech delay", but this 'diagnosis' will not get your child any help at all!
of co-morbid conditions
(such as seizure disorder, Tourette
Syndrome, OCD, ODD, Bi-Polar Disorder, Down Syndrome, etc) should also be
asked for in written form. Some services will not accept children
with a primary diagnosis of autism. I discovered this recently when
I tried to get my son into a local feeding clinic. This is a good
time to present them with a written diagnosis of a co-morbid
condition. I am not suggesting you hide the autism (in
many cases, this would be impossible), but some of these agencies will
take your child regardless of an autism diagnosis if s/he has a
Talk to other parents. They truly are your best resource!
Good luck to all of us!
DIAGNOSTICS AND TESTING
|Autism Center: "Tests Used in Diagnosing PDDs"|
|Medical Interventions: Assessment and Testing|
|Pediatric Development and Behavior: "Developmental and Behavioral Screening"|
|Patient Center: Diagnostic Tools in Autism|
|American Academy of Pediatrics: Practice Guideline Endorsement - Practice Parameter: Screening and diagnosis of autism|
|Autism Biomedical Information Network For pediatricians: The CHAT screen (screening for autism at 18 months). FEAT: Checklist for Autism in Toddlers.|
|Autism Spectrum: Assessment References|
|"The Diagnostic and Treatment Models" Written by Dr. Joseph E. Huggins (ordering information)|
Checklist Form E-2 and Research Questionnaire Form E-3
from the Autism Research Institute
|Autism Resources: Assessment Procedures|
|Complete Assessment Tools|
|Bayley Scales of Infant Development|
|HELP Form for Preschoolers (aged 3-6)|
|VORT: Practical Tools Developmental Assessment and Instruction of Young Children|
|DSM-IV In English|
|What is the DSM-IV? Frequently Asked Questions|
IMPORTANT: The information provided on our website is a general educational aid designed to help you discuss your child's unique issues with your physician, clinician or qualified provider. You should not rely on the information as a substitute for medical or health care advice, or for diagnosis or treatment purposes. Always consult your physician, clinician or other qualified provider as soon as possible about any medical or health-related question. BBB Autism Support Network is not made up of physicians ~ we are families helping other families!
20; July 23, 2002
Please note: BBB Autism Support Network is not responsible for information found on the websites we are linked to.