During a recent Parenting Pointer (see below), I spoke of the young men (yes, they were all male) who had never been diagnosed with anything, but had problems adjusting to young adulthood.
It wasn't until the anxiety and at times, depression, erupted "out of the blue" that parents hit a wall in terms of finding help for their young adult children.
Every one of the young men I diagnosed with high-functioning autism were sent to me by other families with whom I worked.
Every one of these young men are now self-sufficient and, from their description, are very satisfied with their lives which just thrills me to pieces.
And yes, they still reach out to "Miss Claudia" to brag a little on themselves. Lovin' all of it!
I decided to "copy and paste" most of the content of my response to her so that you could benefit from it in case you didn't hear it.
You can go to the podcast and listen to the discussion. It's in the first hour of the show.
Colleen reached out with serious concerns about her 20-year old son who suffers from crippling anxiety even though he has been taking Prozac for 10 months. There is no improvement. He hasn't been able to keep a job. She heard a Parenting Pointer about how "Older fathers give birth to geeky sons" and a light went on in her mind about how her son might just be autistic and this could account for his distress.
In that Parenting Pointer, I talked about the number of 20-somethings I have diagnosed with high-functioning autism who were being treated for anxiety and depression. Several had begun using illegal drugs in an attempt to gain control over their anxiety and a few more who were considering suicide because they felt that there were no answers for them. All were exceptionally intelligent and their behavioral "quirks" had been explained away because of their smarts. They were explained away until the anxiety and depression exploded.
I must say that for every 20-something I evaluated with the history described above, the autism was very evident to me as these guys (all of them were young men) walked through the door.
One young man walked through the door on the balls of his feet. Another young man wore blue nylon shorts like basketball players wear and a red top and I was wearing dark rinse blue jeans and a red top. When I remarked, "Oh, I see you got the memo" and pointed to his outfit and my outfit, he looked at me and said, "I don't get it". I thought, "Of course you don't my friend, you're autistic".
After the assessment, diagnosis and treatment plans were implemented every single one of them has turned out to be very high functioning young adults. And, none of them balked at working with me. They were desperate.
Everyone who is struggling needs a map. The map comes in the form of a comprehensive assessment which begins with an assessment plan.
An assessment is expensive and time consuming. It's very difficult to help parents deal with their anxiety as the process continues, but the client's emotional state and his/her pace and tolerance for the process are paramount and cannot be compromised...EVER. It just isn't possible to get valid results by testing a young adult for 4 hours a day. It's not a forced march.
Attention and anxiety are HUGE issues with autism and must be respected or they will take you out. The results won't be valid and the client is thrown back into the blender.
There are two particularly important "rule outs" to make. A "rule out" is a diagnosis that you reject because the results don't fit the profile.
Think about this example. Is this pain I feel appendicitis? Constipation? Gas? Intestinal blockage? All of these and more must be considered before taking action. Do you sit on the toilet or rush to the emergency room?
The two (at least) rules outs are: Social Communication Disorder and Schizotypal Personality Disorder. Do an online search to learn more as I won't get in the weeds on this for the purposes of this post.
Why am I saying this, parents? DON'T PRESSURE THE EVALUATOR. DON'T DEMAND DRIBBLES OF RESULTS. All of the data has to be gathered and put together like a puzzle. Contain yourselves.
As for Colleen, I've recommended the following steps:
A. Contact the local chapter of Autism Speaks and ask for a referral for an assessment for a young adult.
B. If you strike out there, go online to your county's psychological association and look at their referral list. Find 2-3 clinicians who conduct assessments. In order to give certain tests, they must be Licensed Psychologists. Contact them. If they can answer your questions about their ability to perform such an assessment, go see them first and pick out one that you think your son can work with. Go for an interview to see how the clinician handles it.
C. You absolutely need to go through this process to avoid a false start. Incidentally, some tests can be given only once a year, so if you have a false start and one of these "once a year" tests has been given, you could compromise the results.
D. However long it takes and no matter what kind of hoops you have to go through, this process must be done in a way that makes the clinician confident that the data is valid and tells the truth about your young person's functioning. Their lives really do depend on it.
Here is the assessment plan I use (and modify at times, depending on the client) to evaluate potential autism in a young adult.
You are NOT to take this list and tell an examiner to "give these tests". Clinicians are not allowed to dictate to one another how to do their job. Why? Because your child is not sitting in front of me, they are sitting in front of them. If you don't trust them, move on to someone else before the assessment begins. And yes, this will frustrate you and make you angry.
Understand that there's a great, great deal of information to be gathered by spending time interacting with your young man or young woman and by watching their attention span, cognition, learning skills, their strategies and approaches to tasks and their coping skills the tests results are interpreted.
There is NO substitute for spending the time with them. It takes a good long while for even the young adult with autism to get accustomed to the setting and the examiner. Rapport and trust are critical.
By the time some of you read this (in coming years), "versions/editions" of some of the tests are likely to have changed, so keep this in mind if you read this post in the next decade! Also, I will not explain each test. You're likely to find the basic information online that is available to non-clinicians in order to educate yourselves. Certainly, ask the evaluating clinician, once they offer their assessment plan, to briefly outline the purpose of each procedure or test.
- Wechsler Adult Intelligence Scale-4th Edition (WAIS-4)
- Leiter International Performance Scale-3rd Edition
- Woodcock-Johnson Tests of Achievement-4th Edition
Written Language subtests:
Spelling of Sounds
- Nelson-Denny Reading Tests-Form G/Reading Comprehension
Extended Time Administration
- Wechsler Memory Scales-4th Edition
- Rey Complex Figure and Recognition Trial
- Conners 3 Rating Scales/Long Form (DSM 5) to be completed by client, parents, teachers, if possible, and other reliable persons
- Woodcock-Johnson Tests of Achievement-4th Edition
Sentence Reading Fluency
Word Reading Fluency
Math Facts Fluency
Sentence Writing Fluency
- Behavior Rating Inventory of Executive Functioning-2nd Edition to be completed by client, parents and other reliable persons
- Behavior Assessment System for Children-3rd Edition-Adolescent version completed by client and parents
- Millon Clinical Inventory (Adolescent edition, possibly)
- Social Responsiveness Scale-2nd Edition completed by parents or teachers or other reliable informants
- Autism Diagnostic Observation Schedule-2nd Edition: Adolescent/Adult Module
- Vineland Adaptive Behavior Scale-3rd Edition/Interview Edition to be conducted in office with parents
- Rorschach Inkblots
- Clinical Interviews
- Extensive developmental history (I offer mine in the Resources section of DrClaudia.net)
- Review of records
- Intake Interview
I also recommended that Colleen have her son evaluated, comprehensively, for language processing issues, especially those related to social language and social pragmatics which are the "behaviors" of oral language such as staying on topic, appreciating the emotional state of the listener, eye contact, gesturing, and asking questions to engage the listener.
He may also benefit from an occupational therapy evaluation if he has sensory issues such as dealing with bright lights, scratchy fabrics, noisy settings, etc.
The optimal outcome in those with autism is to have appropriate interventions early and consistently. My young adult clients never had the opportunity to benefit from that kind of interventional programming and it was difficult to find competent and committed practitioners even in my area who could effect meaningful change with these young men. But, we found them!
Take your time in finding supportive therapists. Those who conducted the assessments should have a referral list to help you in your quest. Again, sit with the therapists to determine if they're a good fit for you. You've come this far, don't drop the ball now.
As you move through the process, Colleen, you are welcome to reach out and ask questions or give us updates over the DrClaudia.net "Ask Me" button.
For those of you with younger children, I've outlined the assessment plan for them. See this blog post.
Good luck and let us know how it goes.
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At DrClaudia.net, click on the "Ask Me" button and send me a question.
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