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! |
|
Diagnosis
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
co-existing condition.
|
