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Posts tagged ‘Diagnosis’

Guest Blog: “Interfere with her”

These were the final words of advice from the child psychologist who diagnosed my daughter with ASD over 23 years ago. At the time, I understood neither why this was so important, nor how to do it.
As I read books and articles, connected with community service agencies, therapists, and most importantly with CARD, the picture slowly began to emerge.
Left to her own devices, my daughter would quickly develop rigid habits, obsessive rituals, and limited interests. It became important to offer her alternative opportunities and experiences, although each new experience often led to yet another expectation, habit or ritual. But at least they were expanding, right?
The research literature years ago was more focused on interventions than it is today. These days, most research dollars are aimed at understanding genetic and environmental causal factors for ASD, and thus possibly identifying biomedical treatments for the core symptoms. To date, though more and more physicians are prescribing medications for children and adults with ASD, none successfully address the core symptoms of communication/social skills and restricted and repetitive interests and behaviors. Most medications simply attempt to address non-core symptoms such as anxiety, aggression, depression and OCD.
As for interventions, most researchers are satisfied that methods based in various forms of applied behavior analysis are considered the most effective. Other interventions based in relationship development, cognitive behavior therapy and mindfulness are among those considered emerging, promising, or even sufficiently evidence-based to be recommended by referring professionals.
As a parent, I tried to identify what all the numerous types of interventions had in common, and the one thing I kept thinking of was the psychologist’s words to me as I was on the way out the door: “Interfere with her.” These interventions all, one way or another, attempt to draw individuals with ASD away from habitually limited patterns of thought and behavior, and expand, or generalize, new skills into more socially- and community-based interactions.
So…how do we do that, as parents, when our children can’t be in therapy every waking hour of the day, and most of us cannot afford the maximum recommended amounts of interventions suggested by research?
Some interference occurs naturally, through regular family activities such as worship services, or when children reach an age of eligibility for school services, whether that is at age 3 or 5.
Entering new environments such as school, therapy, or community-based athletic, recreational, or arts classes, can be problematic and stressful. However, if the transition to a new environment is handled according to the child’s need for information through social experience stories or other visual supports, most children with ASD adapt well and come to anticipate the regularity of the new environment. Rules and expectations for each setting may be contextually-specific, but are usually readily accepted by our children, once they successfully comprehend what is being asked of them. The importance of this step cannot be overemphasized.
Other ways of interfering may take place in the family context at home or in the community by deliberately adding activities to a wall calendar or posting flyers of upcoming fairs, football, baseball or hockey games, concerts, or even unique community events such as the recent “Light it Up Tampa”. Each event or activity is a great opportunity to expose children to new environments with new sets of rules, expectations, and perhaps even inspiration.
Just be aware, this may create dozens of new expectations for events that occur weekly, monthly, or annually. In our family, each season is replete with events my daughter anticipates months ahead of time, and we are a very busy family, especially during fair and festival season.
However a family chooses to “interfere”, one thing I have learned is that the gentler that interference can be, the better and more effective. Roughly pulling a child away from a session of lined-up cars or recital of lines from his favorite Disney movies will create resistance without adding a new skill or motivation to divert his attention. Supporting a shift through advance awareness and rewards, which can be faded as the experience itself becomes more reinforcing has worked well for us.
Having said that, the tendency to engage in rigid, limited or ritualized behaviors is still present, but the people who work with my daughter who understand her need to be gently mentored and guided into new areas of experience are still the most successful, and she seems so much happier for it.


anna clay

Why Would I Have my Child “Tested”?

I’m sure over the years you have been asked by either professionals, doctors or even the school if your child has ever been ‘tested’? What does this mean anyway and why would you want to have your child tested?
In the mental health world, undergoing testing usually refers to psychological testing or evaluations. These tests can be very comprehensive and can be a road map for treatment. Many therapists can give screeners, questionnaires and other types of evaluations but a psychologist is the doctor of choice to perform psychological testing.

Here are some reasons why psychological testing may benefit your child:
1. You have been in counseling for some time and little progress is being made.
2. You are not quite sure exactly what is going on with your child but you know something is just not right.
3. You have been given so many different diagnoses and just want to know, once and for all, what you and your child are dealing with.
4. You would like to formulate a treatment plan based specifically on your child’s needs and the areas that they are struggling.
5. You want to rule out a learning disability or uncover why your child is struggling in school.
6. Medication is not working and you are concerned that doctors are “missing something”.
7. You are curious if your child has an underlying disability or area of difficulty that has not been identified.
8. You are looking for an official diagnosis.
9. You would like to know how your child learns best.
10. You would like to rule out any areas of concern that may run in your family.

Psychological testing is able to assess many areas, some of which include:
*IQ testing/Cognitive delays
*Processing speed
*Short and long term memory
*Word Retrieval
*Personality features and types
*Learning styles/learning disabilities
*Mental health

In addition to psychological testing, the ADOS test is also a formal evaluation that can be given to people of all ages to diagnosis Autism. This very comprehensive test is considered the gold standard for diagnosing Autism and uses different modules to determine if a person is on the spectrum.

After testing, of any type, is completed, you should be provided a very detailed report with graphs and charts to show testing results as well as a detailed summary of what the testing reveals. A good psychological report should include:
*Background information
*Testing procedures and results
*Detailed summary
*Detailed recommendations

Written by Erica DuPont, LCSW


5th Annual Autism Health & Wellness Symposium

2014 CARD's Autism Health and Wellness Symposium Save the Date

It’s time again for CARD’s Annual Health & Wellness Symposium! Join us as we host our free one day conference aimed at uniting the community around health & wellness for individuals and families impacted by Autism Spectrum Disorder. Four presenters have been secured to share their expertise around health related topic areas; Caregiver Wellness, Food Aversion & Eating Challenges, Dental Care for Individuals with ASD, and Medical Visits for Individuals with ASD. Exhibitors will be present throughout the day and will share community resource information. We will also be providing Challenging Behavior Screenings as well as ASD Screenings. Appointments are not required for the Challenging Behavior Screenings.

Autism Spectrum Disorder Screenings will be scheduled for families with concerns regarding their child’s development on a case by case basis prior to the date of the event (Please contact Beverly King for more information to schedule your child for an ASD screening at beverlyking@usf.edu)

Register for the event today! https://www.eventbrite.com/e/cards-5th-annual-autism-health-wellness-symposium-tickets-12008913985

What is CARD?

Notes from the Universe (A Love Letter)

“A sense of having been forgotten by ‘normal’ life is common when we are going through difficult times, as if we are trapped in a parallel universe where broken people live.”  

                                                         – Sharon Salzberg, Love Your Enemies, 2013

Dear world,

When my daughter was diagnosed with autism twenty one years ago, there was an overwhelming perception that our family had been snatched out of the only universe we assumed existed, and dropped into a parallel reality from which we could see friends, family members and colleagues continuing along in a brightly lit time-space continuum to which we no longer belonged. Our new universe moved slowly, was a little darker, and the force field between the two realities seemed impenetrable. It often felt as if people in the other world had the power to reach out and pull us back in, but they chose not to.

The assumed sense that one could move about and participate freely in the community was replaced with a list of all the places no longer among our destinations – day care centers, libraries, concert venues, movie theaters, churches, music lessons, art classes, dance class, junior sports leagues. Some of this had to do with being told my child was not welcome, and some had to do with her inability to participate, sit quietly, pay attention, or perhaps my unwillingness to endure the stares and comments of well-meaning people who thought I simply had no control over a three-year old child.

We were desperate to find a way to “fix” her so we could rejoin life in our former reality. In our new life, her existence felt mostly tolerated, her experiences dramatically restricted, and her future certainly seemed bleak. The burden rested squarely on her family and specialists to get her back on track.

No longer envisioning her first day of school, her prom, graduation, college and marriage, I was instead learning about mysterious agencies and services that only existed in this strange new world. We became polyglots in many new languages – funding silo-ese, intervention jargon, doctor speak, ESE-ish and person-first-disability-advocacy talk. Our speech became unintelligible to our former compatriots. Those who stuck with us did so because they understood the language of the heart, which presents no barriers to communication.

Agencies, systems, services, organizations all blended together in a maddening soup. Which phone number leads to clinical services, which leads to funding information, or which leads to parent training? I’m sure I called some places two or three times. I can’t remember how many times I heard, “But that’s not what we do.” It took quite a while to understand, from the organizations’ points of view, that their missions, funding and service mandates were precisely defined by their administrative, funding source, or legislative overseers, and it wasn’t the person on the phone’s fault that he or she could not fix my child, starting tomorrow morning.

After countless phone calls, workshops, conferences and meetings, I finally assembled a map of this new universe.

My daughter worked her way through her new world effortlessly. Those around her scrambled daily to figure out how to smooth her path so that she would never know she was not part of the brightly lit, happy little world from which we had been summarily dismissed.

Through luck or grace, she managed to draw to her side the best of the best in all of the specialized professions. She miraculously found her way across the force field into some beautifully lit rooms from that other place, and from there, managed to draw even more wonderful people around her.

One of the greatest, most profound changes that took place in my own worldview came from one of the organizations I called early on, but set aside because they “didn’t do that” when I asked about direct interventions. This was the Center for Autism & Related Disabilities (CARD) at USF.

By chance, I ran into a CARD staff member at a workshop I was attending about 18 months after my initial contact with the organization. The staff member asked how things were going, and I said, “Okay….” She sensed the implied “but”, and thus began an enduring collaboration and friendship. Over the course of several home visits, quite a few community meetings, and many phone calls, I learned from the CARD consultant that my child was intelligent, funny, had tremendous ability to learn new skills, and most of all, that she was not “broken.” I began relating to my own child in a very different way.

My conversations with teachers and other providers changed from a desperate tone of “somebody has to fix my broken child” to “how can we work together to help each other give my child the supports she needs to participate more fully in the community?” Her school worked collaboratively with CARD and others from the university to learn more about positive behavior support, which at the time was a fairly new concept. Together, we created visual schedules, choice cards and other tools to help reduce challenging behaviors and increase her ability to understand and communicate with others at school and at home.

I began to see CARD in a different light, in terms of its long-term value in the community. Eventually, I became employed at CARD, working in the resource office. The hard-working consultants and other staff members are some of the many silent heroes of our time. Their work is not always something that makes a big splashy difference overnight (though sometimes it does – remember the Not-Too-Haunted Hallways event?). However, a steady, faithful commitment to the core values of community capacity-building, inclusion and quality of life does make a difference over the long haul. It changes how people view our children and adults with disabilities such as ASD. It changes how libraries, zoos, museums and hotels perceive our families. It changes how welcome students are in regular education classrooms. It changes how employers think about the people they might want to hire when filling positions, or how they relate to employees facing challenges of raising children with ASD and other disabilities.

Children being diagnosed with ASD today are coming into a very different world. There are many more options and supports, and it is becoming more possible for families not to feel as if they have been booted out of their own lives into an alternate, far less desirable reality.

Autism has become a word almost everyone has heard — a diagnosis attached to someone related to, or known to, almost every person you meet on the street. Places in the community that did not seem to welcome our children now approach CARD to ask how they can become “autism friendly”. More students with disabilities, including ASD, are being included in regular education classes, after-school programs and junior sports leagues. More programs are being designed to help young adults with ASD successfully attend college or become employed in competitive, meaningful jobs. More and more, people are thinking about long-term, big-picture changes we can make to help our children and adults with ASDs live fully included, meaningful and fulfilling lives as part of the community.

Without a sound or much fanfare, the illusion of a sad, dark, separate but parallel universe is melting away to reveal to everyone that individuals with disabilities never were “broken”, or truly “other”. We all belong to the one and only universe. Our children, too, have gifts to offer and challenges to overcome.

This is a two-way realization. In fact, it seems that people in that brightly lit, smoothly-moving “other” universe always did want to reach out, but until recently, did not know how.  Increased outreach and awareness have shown there is help, and where to find it.

So – to the unsung heroes of CARD and the many other organizations working every day to raise awareness, build capacity, and fundamentally change the (one) world in which we live – thank you!


Jean MacNeill

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