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Posts tagged ‘Diagnosis’

Father’s Day

Father’s Day is coming up and I wanted to devote this blog to all the wonderful fathers out there! Earlier this month, I got to visit with local autism dad Olando Rivera, former champion kick boxer and owner of the B.A. Warrior gym here in Tampa. If you’d like to read about my visit and get some great input from a primary source, please feel free to check out here.

It’s no real secret that compared to mothers, fathers don’t receive nearly the same amount of appreciation for what they do. To be fair, there are (mostly cultural) reasons for this. With many families in America, the dad is out working most of the day while the mom stays home and raises the kids. There is no study to support the claim that women naturally have more compassion than men do, though according to this article, women express compassion more often through “nurturing and bonding behaviors,” which is advantageous when taking care of a child with autism. Like most things, however, these are just generalizations, and not always the case. There’s a national trend lately that’s seeing more and more dads act as the primary caregivers in the household. Pew Research reported in June 2014 that at least 2 million men are stay at home dads in the US alone  and that number has surely risen since then. So the men are there, and they’re not going anywhere! And this is in no way meant to marginalize the impact or importance of moms; quite the opposite in fact. The mom is the wheel that keeps the whole family spinning, and without them we’d all be lost. This is more about giving thanks to the dads out there, who are just as important and should be respected as such!

To all the moms out there: please, encourage your husband to take a more proactive role in your child’s life. If you read what Olando had to say, follow that advice. His bond with his son is so strong because he got involved, broke down that barrier that so many kids on the spectrum erect, and both father and son are stronger for it. Ultimately though, it’s up to the dads to take that big step. Olando had a great quote: “There’s nothing you can do to change your situation, other than change your situation.” This is very true. A very similar thing happened to my own dad a few years ago. Before I got my diagnosis, my relationship with him was rocky. Not terrible, but we never really connected all that well. After the diagnosis, and after seeing a family therapist, he completely turned things around; he “changed his situation.” Now he and I have a wonderful relationship and I love him dearly. Its stories like Olando’s and hopefully even my own that we’re trying to create more of here at CARD, by raising awareness leading up to Father’s Day.

This Father’s Day, remember to give your dad a big hug, maybe get him a little gift, and most importantly, let him know how much you love and appreciate him!

  • G. Sosso
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Farewell to CARD

As I “retire” from CARD-USF to move on to a hundred other activities, I have been reflecting a lot lately on: how much I will miss everyone at CARD; how much I will miss USF, which has been part of my life since 1967; how much I will miss being a librarian, even if I’ve been kind of a “pretend” one for the last couple of decades; and how much I will miss keeping up on the latest research, publications, and news, though the osmosis effect of social media ensures that I won’t miss much.

Mostly, I am thinking about how much things have changed for families since my daughter was diagnosed in 1992:

  • Her original diagnosis of PDD-NOS no longer exists as a diagnosis
  • Asperger’s disorder no longer exists as a diagnosis
  • Children diagnosed with autism spectrum disorders (ASDs) in the early 90s were very likely to be placed in programs designed for children with emotional/behavioral disorders, or intellectual disabilities, but rarely in programs designed for children with ASD diagnoses. Very often, children with ASD were placed in center-based schools. We have watched education evolve from a dearth of teacher preparation and services, through developing expertise thanks to professional development efforts of school districts and organizations like CARD, through segregated settings at neighborhood schools, to a current landscape in which many more students are fully or partially included with their peers in regular education classes and activities.
  • Interventions have gone from consequence-based, punitive “treatments” to antecedent-based, positive supports that seek to make the whole environment supportive and oriented toward increased communication and prevention of challenging behaviors.
  • Community venues such as child care sites, summer camps, restaurants, movie theaters, theme parks, resorts, zoos, orchestras and museums have gone from being fairly unwelcoming environments, to seeking out training and support from CARD to open their doors and programming to customers, visitors and employees who have ASD.

One of the most beautiful advocacy movements that has emerged over the past twenty years has been the self-advocacy movement working for acceptance of all individuals with or without diagnoses. This movement has recently been represented most visibly by the author Steve Silberman, in his book NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, published by Penguin Random House in 2015. Many public libraries have this book, or can get it via inter library loan if you are interested in reading it. This movement seeks to move from “awareness” to acceptance. Once individuals who have traditionally been marginalized by society develop their own voice and presence, it becomes impossible for them to continue being ignored, and changes happen quickly.

As the parent of an adult with ASD who is very challenged by social & communication issues, I will take with me into retirement a renewed sense of my daughter as an individual with unlimited potential who deserves to be accepted fully by her community, even if she needs a bit more assistance in developing her own voice. But it should be her voice – not the voice of well-meaning people thinking they are speaking for her.

Thank you CARD staff, families and friends, thank you everyone in CBCS and USF for the gifts of your friendship, wisdom, and insight. I leave here the better for having known and worked with all of you.

– Jean

jean and anna 2

Early Detection of Autism: Feasibility and Importance

Back in the late 90s-early 2000s, when I was very young, my family took me to see a behavioral psychologist, as they wanted an explanation for some of my more peculiar tendencies. It ended up being a complete waste of time, as the doctor simply wrote me off as being “shy”, and that all I needed was to get out more, and “eventually it would fade away”. As a result of that blunder, I never received the proper aid that is now more readily available to children on the spectrum and their families. As I’ve grown, matured, and researched heavily into the topic, I’ve come to learn just how vital early detection really is. It can be the difference between a lifetime of success, or one of haphazard dependence.

As the years go by and our understanding of autism increases, so too does the ability for families to detect it in their children early on, and develop strategies to help prepare them for the real world. The numbers from several groups, including Autism Speaks, the Autism Society and the Centers for Disease Control and Prevention, show that as of 2015, 1 in every 68 people lie somewhere on the autism spectrum. According to the Autism Science Foundation, this number is changing constantly. Compared to the 1980s, where the rate was said to be 1 in 10000, or even as recently as the 90s, where it sat at around 1 in 2500, nowadays we have a much deeper understanding of what autism is, and the signs to look for in order to make the diagnosis.

To quote an article from parents.com, “There is one point upon which every autism advocate and expert agree: The earlier in life ASD can be identified and treated, the better.” So let’s say that you find a good doctor and get that all-important diagnosis. What now? Where do you go from here? Well, the truth is that it depends on where your child falls on the spectrum; i.e. the severity. In the case of high-functioning individuals, some of the most effective strategies are teaching them to make eye contact, play and relate with other kids, and giving them a bit more attention then you perhaps would otherwise, to let them know that they are loved. For those who fall lower on the spectrum, who may never even be able to speak, alternate methods of communication can be taught to give them the voice they deserve.

The most important question, then, is when is the right time to test your child for autism? For many years, the agreed upon earliest age was 3, but current American Academy of Pediatrics guidelines state that screening can (and should) begin at 18-24 months. Some, however, still hold onto the old number, as when you’re dealing with baby-toddler aged children, it can be difficult to ascertain what is typical and what is not. Regardless, one thing is clear: our ability to detect autism at an early age has never been better, and all families are highly encouraged to use the resources available to them. It could make all the difference in your child’s life.

Written by G. Sosso

References:

Autism Science Foundation How Common is Autism
Parents.com Importance of Early Detection Autism

Family Support

What is the first thing that comes to mind when we think of supports for families of children with ASD? Probably service categories: respite, in-home ABA therapy, good placements and related services on the IEP, financial assistance, assistive technology – that sort of thing.
Increasingly, families are discovering that services are not available or they are limited, due to funding cuts, lengthy waiting lists, and shortages of providers.
Finding ourselves in this situation, it is tempting to feel as though we are without any support at all, left to manage as best as we can, even though we feel our children’s entire future is at stake, and the “system” is letting us down.
We can make a decision at this point to respond any of several ways:
• We can become angry and desperate, lashing out at anyone who picks up a phone at the other end, complaining, threatening, and sometimes crying. As Dr. Phil might ask, “How’s that working for you?” Exactly;
• We can advocate for change for the sake of our children and others, by contacting local, state, and federal legislative officials or state agencies that control the funding or regulation of various services, and ask how we can help them increase the availability of services, funding, or providers in our area or state;
• We can try to become one-person autism fix-it machines, learning how to implement therapies at home, homeschooling our children, or starting our own commercial or non-profit organizations to provide services, funding, or other options.
• We can ask for help from family members, friends, co-workers, fellow worshipers, and others, to give us time to run to the store, provide after-school care, or to help implement behavioral interventions.
However we decide to handle things, there is another type of support system we can add to our toolkit that we might not have considered. This is something that might not become apparent until years down the road, after our children have finished school, ended years of after-school therapy sessions, and we have found some kind of peace with the diagnosis, acceptance of the imperfections of public and private systems that are supposed to help, and have come to accept our own strengths and limitations, for whatever successes or failures we have managed to have, as parents.
Coming from the other end of this parenting experience, I can hand back a few pointers to my younger self for where to find this hidden system of support:

Dear younger me: Look in the quiet places of your life that have nothing to do with ASD, ABA, IEP, SSI or XYZ.
But what does that mean?

It means the peace, strength and acceptance you will find years down the road doesn’t necessarily come from yelling at people on the phone, or convincing people in power to do things your way, or “winning” the biggest battle of all – “fixing” the autism. Any or all of those may or may not work out.

What do you mean by “quiet places”? Where do I look?

What happens while you are dealing with the big “A” in the room, is that your life as a human being continues to go on all around and inside you. You may find love, happiness, acceptance, and inclusion in places that aren’t even on the checklist of “supports” you are going after on behalf of your child.

1. What about the teacher who says she is happy to see your child come to school in the morning because his fantastic smile always makes her day?

2. What about that person in the prep area at the back of the taco place who sees your very unique order come up on the screen and yells, “Oh that’s gonna be my girl. How’s she doing today?”

3. What about the spiritual leader, or counselor, or other mentor, who helps you gain insight into the purpose of your life, and helps you believe in yourself?

4. What about that friend or family member who takes a special interest in your child and always asks for updates and news on the latest successes? Even after all these years, dear younger self, I still run to the computer every day to send mom photos of my child’s latest painting or tell her a story about a little breakthrough.

5. What about that moment when you revisit an interest you had pre-autism, and get back into a spiritual practice, or dance, or theater, or sport, or fiber art, or painting, or finishing a degree you left half done in order to become a super autism parent? Let’s take a sensory tour of all those places. Walk into a place of worship, or meditation center. Feel the years of devotion, prayer, silence and peace that fill the space. Walk into a dance studio. Look at the beautiful floor and the mirrors. Walk into a theater. Smell the paint and sawdust, run your hands over a few seats. Walk into a gym or locker room. Smell the sweat. Remember what it feels like to be physically exhausted and emotionally flying. Walk into a fabric or knitting store. Touch some fabric or yarn. Walk into an art store. Smell, look, explore. Go online and look at next semester’s classes. Register for the one that excites you the most. If they still use physical textbooks, walk into the bookstore and take a sniff. If not, go to the office supply store and pick up a notebook and pen. Smell that place, and see if you don’t get an extra little thrill. Whatever it was that got you excited, put yourself physically in touch with it and briefly fill your senses with that particular environment.

Then go home and try, younger me, to sit quietly for a moment or two, and forget about all the advocacy and urgency and things that aren’t going right all around you.I know there are many. Just let images float through your mind of people, moments, places and activities that make you feel happy, alive, and peaceful. Don’t put words to it. Just let it all be there for a bit.

And by the way, younger me – try, before too many more years go by, to stop saying No to all those things in number 5 because you are too busy. Say yes to something small. See if your child might join you in doing something together. Crack open that part of your life where your deepest joys await you.
For all you know, doing things that excite and fulfil you might be an inspiration to your child to develop his or her own interest or hobby.

A parent-child relationship is built on the foundation of so much more than the services and supports we usually look to when a child is diagnosed. Sometimes the most profound inner strengths are grown and nurtured in the quiet corners of our lives that go unnoticed and under-appreciated.

Go there. Find what can be loved and nurtured. Let it grow and support you in ways you can’t imagine.

  • J. MacNeill

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.

Jean

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

www.protherapyplus.com
www.seemyiep.com

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

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