Author: <span class="vcard">Ashley</span>

“Bits” is my favorite word, I think. When I studied in London, they used it for so many purposes, and I’ve loved it ever since. Your purse is full of bits, orange juice can be with or without bits, you better get those bits off the counter. It is wonderful.

I often stumble upon articles, videos, etc. on the interwebs that make me think, laugh, or reflect on my career and life. I would like to both have a place to store them, and to share them. So I think whenever I accumulate enough to warrant a post, I will post ’em here. My bits.

Cake Left Out in the Break Room– There seems to be a never-ending amount of cupcakes and donuts left out at my clinic. I never have a clue whether I should cut them in half, take a whole one, or just have a sliver. This made me laugh.

Using cues to justify SLP services– The Speech2U blog is delving into providing levels of cues and how that knowledge allows us to better advocate for our services (vs. tutors, parents, teachers, etc.).

Awesome grammar tips– The SLP grammar police in me loves this.

Happy December y’all.

 

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Several weeks ago, I went to Las Vegas for the first time. The duration of the visit was about 24 hours, and when I arrived at the airport for my departure back home, I had about an hour to kill before my plane boarded. I didn’t really want to engage in mindless slot-machine gambling, nor was I in any mood for a beer. My iPad was dead and I had nothing with me to read. Although the people-watching in the Vegas airport probably could have entertained me for far longer than a measly hour, I meandered over to a news stand to peruse the book section and write down any I may want to read.

One in particular stood out to me, and I am not sure why. It was by someone I had never heard of, Susannah Cahalan, and was entitled Brain On Fire: My Month of Madness. The cover described Susannah’s experience of going mad, but left the cause elusive. I scribbled the name down at the top of my list.

When I got home and downloaded the title, I started reading it and pretty much didn’t put it down until I was done. I think just about any SLP would love this book, it was almost like a real-life episode of “House” except full of neurology and cognitive testing that we are all familiar with, whether in our daily lives or in memories from grad school. I was fascinated.

Then the end came. And Autism was brought up. I cannot go on without giving MAJOR spoilers about this book, so go read it and then come back. It won’t take you long and you will probably be up all night thumbing through the pages.

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Susannah ended up being diagnosed with a newly discovered type of encephalitis: anti-NDMA-receptor autoimmune encephalitis. Her symptoms were numerous and included seizures, hallucinations, paranoia, motor difficulties and dysarthria, among many others. This particular type of encephalitis causes the immune system to attack NDMA cells in the brain, which heavily populate areas such as the hippocampus. Adults with the condition are often misdiagnosed with schizophrenia and are put in psychiatric wards. Since research on this condition is very new, true incidence/prevalence data is difficult. Susannah was given an intensive dose of pharmaceutical treatment and made almost a full recovery (this is not always the case, some die and some only partially recover lost skills).

Here’s the clincher. While adults with this condition are frequently misdiagnosed with schizophrenia, children are usually diagnosed with (you guessed it) Autism. Symptoms of anti-NDMA-receptor autoimmune encephalitis in the pediatric population include temper tantrums, mutism, hyper-sexuality, and violence.

A bigger clencher? Susannah notes that roughly 40% of patients diagnosed with this type of encephalitis are children (Cahalan, 2012, p. 424), and that the number is increasing. The doctor who finally diagnosed Susannah estimated that at that time, approximately 90% of people with the condition went undiagnosed (Cahalan, 2012, p. 427).

Before anyone gets excited, the population of children diagnosed with Autism who actually have anti-NDMA-receptor autoimmune encephalitis is most likely very, very small. Those kids (and adults), however, are out there.

In that lies the next problem: this condition is difficult (read: expensive) to diagnose. Susannah had to have a BRAIN BIOPSY before she was officially diagnosed. Allow me to quote Susannah here:

“Unfortunately, for most people suffering from severe psychiatric conditions, it’s nearly impossible to give everyone the proper testing to diagnose and treat autoimmune diseases. PET scans, CT scans, MRIs, IVIG treatment, and plasmapheresis can cost upwards of thousands of dollars each.” (Cahalan, 2012, p. 430).

Autism being related to autoimmune issues is not a new concept, and anti-NDMA-receptor autoimmune encephalitis has been added to the DSM as a medical cause for Autism (Schieveld et al., 2013).

A large-scale study was done last year that found a relationship between autoimmune disease in mothers and children with Autism (Brimberg, Sadiq, Gregerson, & Diamond 2013).  It has always been one of the biggest areas of interest in  my mind when I think about the disorder, but I am not sure this area of information is reaching affected families.

Do you have any experience or thoughts on autoimmune issues/disorders and Autism?

 

Citations:

Brimberg, L., Sadiq, A., Gregersen, P., & Diamond, B. (2013). Brain-reactive IgG correlates with autoimmunity in mothers of a child with an autism spectrum disorder. Molecular Psychiatry, 1171-1177. Retrieved October 13, 2014.

Cahalan, S. (2012). Brain on fire: My month of madness. New York: Free Press.

Schieveld, J., Wolters*, A., Blankespoor*, R., Riet, E., Vos, G., Leroy, P., & Os, J. (2013). The forthcoming DSM-5, critical care medicine, and pediatric neuropsychiatry: Which new concepts do we need? Journal of Neuropsychiatry, 25(2), 111-114. Retrieved October 13, 2014.

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Note: I would like to do regular research reviews here; however, I am trying to find the best way to present it. Often, when I read research reviews, my eyes glaze over 90% of what the reviewer is saying. This is not necessarily true when I read the articles themselves (I tend to digest every word). I am starting off with more of a bare-bones, get to the point approach… we’ll see how it goes. This will be an ongoing process as I figure out what works and what doesn’t. Feedback is always appreciated!

Associations Between Toddler-Age Communication and Kindergarten-Age Self-Regulatory Skills 

Full citation following post.

I get really excited when my inbox pings with a new issue of an ASHA journal. My eyes skim the headlines, noting which I want to read immediately. I was beyond excited when I saw this title.

I have a dedicated interest in the relationship between sensory and communication development. I am 3/4 through my SIPT certification, and love reading about how sensory development can inform our practice. I therefore saw the word “regulatory” and downloaded the PDF immediately.

I was disappointed at first by the lack of discussion regarding the relationship between sensory systems and self-regulation (the authors define self-regulation in broader terms). I then got over it and got excited about their discussion regarding executive function and emotional regulation. So, let’s get into the article.

Why is this article important?

  • Communication does not develop independently of other systems. Language, cognitive, motor and sensory systems all intertwine and compliment each other. This article inherently supports this and contributes to the bank of literature on how these systems interact.
  • It shows a positive correlation between toddlers with a more broad development delay and those with an expressive delay and later self-regulatory skills (Kindergarten age), as compared to typically developing children.
  • Interestingly, it showed that children with an expressive-only delay were rated to have more executive and regulatory difficulties than the children with a more global delay.

How does this contribute to clinical practice?

  • We should be continually monitoring executive function, emotional, and social development alongside language development as soon as kids start treatment. These were toddlers!
  • Upon discharge, we need to inform caregivers of what they should monitor and what is typical vs. atypical.
  • We need to collaborate with other professionals in order to provide holistic treatment in all of these areas.

What are the limitations of this study?

  • The sample size could be bigger. However, it is nothing to scoff at in this case. 185 children were part of the data set, which means the investigators had all of their toddler data and that the parents also returned the questionnaire when their child was in Kindergarten. This is from an original sample of 508. The disparity is due to the number of data points the authors wanted (several points of data from various ages in the toddler years along with the Kindergarten data). Despite the always-present limitations of the “Were the parents that returned the questionnaires inherently different than those who didn’t?” question, I am still pretty satisfied with that sample size. I do love a good longitudinal study.
  • They primarily used parent questionnaires.
  • Correlation does not imply causation.

Overall, I think this is worth a read (it’s available to all ASHA members).

Full citation:

Aro, T., Laakso, M., Maatta, S., Tolvanen, A., & Poikkeus, A. (2014). Associations Between Toddler-Age Communication and Kindergarten-Age Self-Regulatory Skills. Journal of Speech, Language, and Hearing Research, 57, 1405-1417.

 

P.S. I hope you all have a great week at work, especially those who are starting back in the schools this week (although I am quite jealous of your summer off!).

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There have been lots of reactions to the New York Times article entitled “The Kids Who Beat Autism.” Most have not been good. My reaction was a sort of blood-boiling anger, but perhaps not for the same reasons. After reading it, I immediately and frantically started texting my boyfriend all of my thoughts and feelings, and he was like “Isn’t this why you started a blog?”. Yeah, I guess it is.

Most people have been upset, for various reasons, about the main premise of the article. The article focuses on the idea of “recovering” from autism. My opinion on this is that the scientific verdict is still out and the idea of “recovery” is a (hostile) grey area.

Did kids that “recover” ever truly have autism? Maybe, maybe not. Is there a subtype that has the potential for recovery? Maybe. Is it wrong to consider autism as something that needs recovering from? The answer to that is different for everyone based on their personal experiences with this matter. Those with a child or family member with autism are far more qualified to give their opinion on that particular discussion than I.

Another cause for the great upset is in the first paragraph of the article,  where it states that a “speech therapist waved it off.” ASHA submitted a letter to the New York Times about this, and last I checked they were still waiting to see if it would be published.

My feeling on this particular issue is that if the author doesn’t care enough to get the name of the profession correct (in the US, there are no licensing boards for “speech therapists.” We are not “speech therapists.” Anyone can call themselves a “speech therapist.” I paid a lot of money for a degree and for licensure as a Speech-Language Pathologist), then I don’t really think their opinion on that particular profession is valid. Also, we all miss things we wish we would have seen. So, this isn’t what caused my anger either. Get my name right and then we’ll talk.

What made me upset is also one of the main reasons I started writing in this little corner of the internet. I plan on having a whole series on this issue, but I do not find it beneficial therapeutically to classify something as a “behavior.” The reasons and research behind my feelings on this will be discussed at length in what will probably be a series of posts, but is beyond the scope of this entry.  This article made ABA out as the be-all, end-all of therapy for autism. I am really very sick of this in the media. There are better interventions. If you are reading this, you probably know that.

End rant. Let’s all move on with our lives.

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“Family-centered therapy” has become such a widely used phrase in all sectors of speech and language pathology. When I was in graduate school, it was weaved into all of our coursework; however, there didn’t seem to be much depth to the process. It was almost implied that you would make the family a primary part of your service delivery, with little discussion on how to achieve this.

As I transitioned to the workforce, I heard mentors speaking negatively about other clinics being “medical model.” I listened to staff in-services about the importance of being family centered.

I got the general idea of it. Obviously, involving families leads to better generalization and improved outcomes (if this doesn’t seem so obvious, do a quick literature search). I also was given the impression that “medical model” meant ripping a child away from their parents in the waiting room, working on “fixing” them for an hour, and then returning them to their regularly scheduled programming.

Umm. That sounded terrible.

What do these terms actually mean?

According to an oldie-but-goodie article written by Elizabeth R. Crais in 1991, family-centered therapy involves the principles of: making families and clinicians equal contributors to assessment and intervention, fostering and expanding families’ skills in line with their personal wishes and recognizing the individuality of all families while adjusting yourself accordingly. (Crais, 1991).

The medical model, across disciplines, involves the professional diagnosis of disorders and designing a treatment plan with appropriate implementation. This is not necessarily ripping the child away from their parent for an hour! A parent can just as easily be in the room observing this model.

In other words, “family-centered therapy” is more than having the parent in the room, and the “medical model” doesn’t mean the family isn’t present.

Put into practice

Research shows both better generalization and more functional outcomes with a family-centered model. This, for me, is particularly strong for the research surrounding parent-implemented milieu instruction (which deserves its own article one of these days), and with the DIR/Floortime and Sensory Integration research (both of which will most definitely be getting their own posts).

That said, the medical model is not the devil. We are highly educated in the areas in which we treat (my Sallie Mae account likes to remind me JUST how educated I am), and our skills as diagnosticians and treating therapists should not be discounted.

Putting these principles into practice, however, is easier said than done. It is largely setting-dependent, as few parents come to their child’s speech sessions in schools. Even in the outpatient world, many view it as their time to run to the grocery store. In home-based services, it’s dishwashing time.

In the outpatient setting, parent involvement can be emphasized from the assessment onward. Problems can be encountered, however, when you inherit a child from another clinician or when the assessment was completed elsewhere.

In schools there is the wonderful opportunity to develop goals with the parents in the IEP meetings, but you are restricted to academic-based outcomes. This one time a year is also often the only time you see the parent.

It comes a bit more naturally in EI settings, but varying levels of family stress and routine play a role here, as well.

So, what’s my point?

My point is that we all have to do the best we can with what we’ve been given. There is a continuum ranging from parents not being present, to parents being informed of what they can do, to parents observing, to parents participating, to parents co-treating. Every case in every setting falls somewhere on that continuum.

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Our goal, I think, isn’t to bring them all the way from the left to the right. Our goal is to nudge them along until we reach a place where everyone feels the family and child is reaching maximum benefit from their current resources.

If you only see the parent once a year, try giving them a call once a month or sending home an update on what you’re working on and how to implement it at home.

If the parent is in your session, but texting the entire time, ask them how things are going at home and provide suggestions from there.

Taking these small steps to move our treatment up the hierarchy can help us involve families more and more, without feeling overwhelmed about the process. It also takes a lot of stress off of you to “fix” things in the short amount of time you see them. I think we can all agree we could use less stress.

 

Citations:

Crais, E. Moving from parent involvement to family-centered services. American Journal of Speech-Language Pathology, 1, 5-8.

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As pediatric Speech-Language Pathologists, we can do better.

The pediatric sector of our profession has always been the less “glamorous” side of the field. I remember speaking to a supervisor in graduate school, a very well-respected clinician in the world of adult dysphagia, who told me she wouldn’t work with children because she didn’t spend years in graduate school just to “play Hi-Ho Cherry-o” for the rest of her life.

Really? This is the outlook my fellow SLPs have on the developmental side of therapeutic intervention? I realize this is not how everyone sees it, but as I have progressed through my career this type of thinking pops up much more frequently than it should.

Then again, can I blame them? I look around and see burned-out clinicians laying four-part sequencing cards in front of children for an hour and calling it intervention. Asking wh-questions from a deck of picture cards as the child wiggles in his or her seat. Strapping 20-month-olds into chairs and giving them stickers or candy for imitating the word “ball.”

This isn’t functional. This isn’t supported by research. This isn’t treating holistically or developmentally. We can do better. We have all seen it, we have all done it, but we all can do better.

I am writing this because I want to be inspired by my fellow clinicians, and learn from them. I want to share our experiences and research and clinical expertise so we can all do better. Together.

I have seen many wonderful blogs centered on adult-based services that are heavily rooted in research and professional issues. My favorite, Gray Matter Therapy, is incredibly inspiring. When I look to pediatric blogs, however, I am (often, not always) directed to lovely and well-written articles on how to decorate a bulletin board in your room or how to “teach” pronouns using downloadable worksheets. These are wonderful resources, but I’d like to dig deeper.

I have seen brilliant pediatric SLPs take children from a quiet, unengaged world to laughing and communicating with their peers. They did not get there from sequencing cards, or pronoun worksheets, or pretty bulletin boards.

They got there from research-based, engagement-driven, play-based therapy.

We can do better.

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