Should I get a psychological evaluation to rule out ASD? (Part 1)

Questions like this one are very common in my circle. The main driver of this question is the underlying fear:

Is it possible to misdiagnose autism or ASD during early childhood?

The answer is: Yes, absolutely! To understand the how and why autism may be misdiagnosed, I think it is best to understand the process and the issues associated with it, so that we can better understand how to move forward.

Let’s look at the whole process, shall we?

What happens first?

One of the most difficult questions for parents to answer is whether they would like to receive a psychological evaluation for their young child. Even though this is a simple yes or no answer, the majority of parents that I’ve worked with are baffled or just simply confused by this question.  This is a question that parents may be asked at different times during the early intervention years.  Sometimes it occurs as early as during the initial meeting, before any services are even provided.  Other times, it is a questions posed by different member of the therapeutic team.  Sometimes, this question gets asked at multiple times by different people. 

But what does this mean?

A psychological evaluation done within the context of early intervention serves one main purpose:  to either diagnose, or rule out the diagnosis of ASD. Perhaps an evaluator suspected that this may be the case, and the questions gets asked at the initial meeting, or perhaps a therapist feels that a diagnosis is the best course of action, hence the question to the parents.

For the most part, when parents hear the words “psychological evaluation,” they become anxious. This happens sometimes because there isn’t enough time spent on explaining exactly what this means. Sometimes, parents themselves are too shocked to even ask any questions. And some other times, parents feel “pushed” to make a decision, shut down, and no longer ask questions.

In my almost 20 years as an early interventionist, I have seen the gamut:  I have seen parents whose children would benefit from an evaluation, but the parents did not consent to one, and I have also seen parents whose children were clearly not on the spectrum, but were pushed to get one.  The result?  Children with autism that do not get what they need right from the start, but also quite a few children without autism who receive diagnoses (or misdiagnosis) of ASD out of pressure and get therapies that are less than ideal for them.

What happens after the diagnosis?

What happens next typically depends on decisions made at family planning meetings after evaluations are completed.  In general, Applied Behavior Analysis is offered as a method, often, but not always, at the direction of a special instructor (a teacher trained in special methods and strategies).

Parents normally ask me about this type of methodology, wanting to know my personal opinion of this method. I often respond that the methodology need to fit the need. I often remark that even though a cold and the flu may look alike, only the flu gets an antiviral prescription, not the cold. Similar ailments do get different courses of treatment. The same is true of ASD and other conditions.

I’m not sure, what should I do?

If you are not sure, sometimes it pays to wait just a few months (2, 3 or 4, but no more than 6), and observe your child. Consult with your team. Read up on the subject. Talk to family. Let the current intervention work. Do all the carry over homework that your team suggests you do.

But most importantly, listen to yourself. Listen to your heart. I always listen to the moms and dads I work with. They are my BEST RESOURCE!

Stay tuned for more information. And as always, leave me a note with any questions.

Boy sitting holding a pink toy

Cheers!

Dr. Klimek

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When the Bully is Your Boss: Breaking Free of Toxicity

It will soon be a whole year since I turned my life around. Yes, I broke free not only from my bully boss, but also from the bully mob: Those that were once my friends but preferred to secure a paycheck rather than their own dignity. My work week consisted of never ending work days that had no substance other than securing a paycheck.

Does this resonate with you? Since I left my job, I realized that breaking free from the bullies not only means planning your exit, but also dealing with the abuse in your own mind so that you can turn every obstacle into an opportunity. Does the bully tell you that you will never amount to anything? Amount to EVERYTHING: Be so successful that you exceed your own goals and expectations. Does the bully threaten you with your job security? Learn that no job is ever secure, and take steps to find security in work for yourself, not at the whims of someone else.

Turn every challenge into an opportunity!

The truth is, if you have become the bully’s target, it is possibly because you are actually perceived as a threat by the bully (Tip: If you have ever seen the movie Mean Girls, you will recognize this by the way that Regina George treats Cady). Bullies rarely pick on employees who they don’t perceive as targets: They pick on those that they perceive as threatening.

But even this is not a rule. There are bullies everywhere, and the workplace is not an exception. In fact, the Workplace Bullying Institute, 37 percent of American workers are targets of bullying, while nearly half (49%) are affected by it in one way or another (by witnessing it, for example). That is a really high number!

If you have been bullied at work, by your boss, none of these statistics will matter. What matters is to keep you sane, safe, and give you the tools to execute an exit plan, while you continue to work in a toxic environment. Yes, you will be gaining strength while planning the exit.

How do I know this? I did this myself. I tried everything to try to stay in my job of 21 years. It was a large department that brought me a lot of happiness the first 18 years of my work there. The last 3 years, however, were nothing but miserable.

In the end, I decided that the best alternative for me was to move on. I was very afraid that I would not be able to support myself, let alone be successful. So I crafted a careful plan and set it in motion. Here I am, almost a year later, much more successful than I could have imagined.

Do you want to know more about my experience and learn more about what you should do to finally break free of your bully boss? Sign up and I will keep you posted!

And please stay tuned as I prepare to launch a new feature as the one year anniversary of my entrepreneurship approaches: June 15.

Cheers!

Man and woman at a cafe
My husband and I enjoying the work-from-anywhere environment: Sitting at a cafe in Buenos Aires.

My Son’s Disability is Invisible. On Mother’s Day, I Celebrate

Guest post by Stephanie Duesing

Disclosure: The post below may contain affiliate links.

I didn’t know my son Sebastian until he was fifteen. That was the year we had our first real Mother’s Day celebration. We lived in the same house together for fifteen years, so don’t misunderstand. I gave birth to him. I changed his diapers and taught him to ride a bicycle.

I was a stay-at-home mom, and he was my only child, but I didn’t know him. We spent hours together every day playing and doing crafts together. He painted the most extraordinary pictures even as a toddler. His existence filled my imagination from the moment that I looked at the faint blue positive mark on the pregnancy test, but I still didn’t know him until he was a sophomore in high school.

Now Sebastian is eighteen, and every time he hugs me I can still feel the shell of his tiny newborn ear against my lips and his infant body in the nook of my shoulder where his chest meets mine. I always inhale, trying to recapture that baby smell and the tickle of almost invisible hair on my lips. His hair is now thick and smooth, not the dandelion fuzz of pale blond.

He still hugs me every night before I go up to bed. Even after everything, especially after everything, Sebastian tells me that he loves me. Now taller than me, when his long arms reach around my shoulders and he leans in for the hug, I can still feel his little sneakers banging my hips and his little toddler arms hugging my neck. I smell the ghost of Cheerios-past every time. I hear his child’s voice whispering,”You are the best mom in the world.”

In the car when we talk about the things we’ve been through together, about how I finally came to know him when he was fifteen, I reach my hand out to him. Sebastian’s cool, long-fingered artist’s hand lands in mine, squeezing. In his gentle adult grasp I feel the ghostly hand of a child in mine, much smaller.

I cherished every sweet moment with him. Every hug, every smile, every game of hide and seek. I rocked him to sleep each night when he was little. We read aloud together until he was twelve. He still hates Les Miserables. Tolkein was more his thing, with the dragons, wizards and the magic ring that makes you invisible but also drains your soul.

What magic ring did Sebastian have that cast its spell so thoroughly over him, that it silently saved him while killing his soul? Surely it was not the cloak of invisibility that he wore all through his childhood as he zoomed through my house waving his wand. He was Darry, King of the Fairies and Professor of Defense Against the Dark Arts. He cast his charm all over so thoroughly that I didn’t see him. I couldn’t see him.

Nobody saw him. You see, Sebastian is the only person in the world known to see with words like a dolphin sees with sound. His blindness is an invisible disability. He has always slipped through our sighted world with what appeared to be the same ease as a spinner dolphin flying through the air.

I remember his eyes, so bright blue and filled with pain as we both sobbed on the kitchen floor. It was January of 2017 and we had just discovered that fifteen-year old Sebastian couldn’t recognize his own face and had taught himself to navigate our own home by counting his steps and turns. I had to tell him that he’d been born blind, not understanding how it was possible myself.

Now I am privileged to see the man who walks through this world with dignity and grace. His dry, laconic humor cracks me up, and his striking art inspires me. With his help and support, I am fighting to end the discrimination against the millions of people who have cerebral/cortical visual impairment. CVI was identified as the number one cause of visual impairment in the developed world more than ten years ago and still doesn’t have a diagnostic code. On Sunday, May 10, 2020, I will celebrate my fourth real Mother’s Day as Sebastian Duesing’s mom. I was always his mom. I just didn’t see him.

About the Author Stephanie Duesing is the author of Eyeless Mind: A Memoir About Seeing and Being Seen, a true story about the discovery of her son Sebastian’s almost total blindness at the age of fifteen.

Stephanie is devoted to raising awareness of Cerebral/Cortical-Visual Impairment (CVI) and advocating for patients with this prevalent but largely unacknowledged cause of visual impairment.  A music educator, Stephanie has taught elementary and middle school music and chorus, as well as private voice and piano. She also opened her own Musikgarten studio, where she taught classes for families with babies, toddlers and preschoolers. She’s a graduate of University of Illinois at Urbana-Champaign and lives in the western suburbs of Chicago.

Dealing with Disabilities During Quarantine

Disabilities in the times of Covid-19.

How has this quarantine influenced your daily life as a family member of an individual with disabilities?   I feel that these uncertain times have brought out the best and sometimes the worst in people.  It has exposed what connects us as humanity, but it has also shown us what divides us.  For many of us, those of us who live with children or adults with disabilities, this Covid 19 stay-at-home has been nothing short of challenging.

In my case, I have had to come face to face with my fears.  And yes, I was confronted with the very common fears of getting sick and dying, but I have also been confronted with the very real fear of losing all of the gains that I have worked so hard to secure for my brother, namely,  to be accommodated, to be included, to be understood, and to be valued as a human being.  My brother is an adult with multiple disabilities, who needs assistance for daily living activities, and needs help navigating what the rest of us may call mundane.  He finds it impossible, for example, to wear a mask in public without avoiding the feeling that he is choking to death. 

I have been in communication with my friends around the world, who are struggling to keep their children or adults with disabilities active, focused, and who are doing whatever they can to prevent the isolation that is so common in our population.  While many parents all over the world are struggling to make distance-learning work for their young school age children, families of children and adults with disabilities are struggling to hold on to the gains that they had already attained in society. 

On the other hand, it may be frustrating to see how quickly society reorganized to accommodate for this pandemic, as many of us shifted to working from home.  Working from home had been repeatedly requested by our colleagues with disabilities around the world, and most times not granted, forcing them to have to adapt themselves to a world that was not created with their needs in mind.  We are quickly seeing how the wheels have turned to accommodate society “at large.”

We also struggle because although we understand why these new guidelines were put in place, and how dangerous it could be not to follow them, we cannot avoid a feeling of déjà vu when it comes to safeguarding the rights of our loved ones.  We are constantly caught in the middle of conversations, but we are not always able to raise our voices loud enough to be heard.  I remember distinctly how the “gender-only” bathroom conversation was so personal to me.  After my father passed away, my mother became my brother’s only caregiver.  So, when my brother needed assistance in the bathroom, was she to do it in the ladies ‘room?  Or in the men’s room?  There is no conversation that does not include our population whether we recognize it or not.

So perhaps while we are sad about how much we miss our shows, going out for dinner, or travelling, all valid reasons to feel blue, let’s for one moment think of our fellow human beings with disabilities and about how we can make this place one that includes us all.  Let’s remember that they, too, want to see shows, go to dinner, freely ambulate the streets, and travel. 

Mother with her adult son.

Please let me know how you are feeling by dropping me a note below.