Does Special Needs Equal Medication Needs? 5

This post is part of Danette’s wonderful Best of the Best Series at S-O-S Research Blog where the topic this month is medication use related to those diagnosed with invisible special needs. I mentioned our bad experience with medications in my Therapy? What Therapy? in August, so you might assume I am totally against medication for this group. I am not.

Yet, I am against medications being the first choice especially for young children. First, you need a full workup to rule out alternative causes and to help assist in obtaining an accurate diagnosis. Yet, we have some psychiatrists who skip this step or who, if they do not completely skip it, still fail to order a complete evaluation prior to prescribing medication.

Unlike one of my fellow bloggers in this series, I do not believe the reason is for financial gain. Wonder why? I spent years working for various insurance companies, and even volunteering on legislative committees for case management organizations. I am also married to a physician. Doctors receive money as speakers, but they also go to extra training on medications and take time away from their practices to do this and most do not take prescribing new medications lightly either.

Remember it is their license on the line if a medication causes life threatening side effects. Doctors also pass on samples of medications to their patients who cannot afford them. I really want to write a post about when and why we stopped trusting any doctors, but that is a post for another day.

None of the medications prescribed for my child were samples, nor were they medications newly on the market, yet they still were unhelpful and inappropriate for her since they did not address the root of her problems, and in fact made things worse. Lack of understanding of her sensory sensitivities resulted in the wrong treatment.

I was given a check list to compare at one point to determine which diagnosis my daughter had, ADHD or Bipolar Disorder. I told both doctors that neither one really fit her, but they suggested I guess as to which one fit best. There is a reason I speak out about wrong diagnoses and especially wrong diagnoses in girls. No one even mentioned Asperger’s or autism at that point nor did they mention sensory sensitivities despite the fact that my daughter had text-book characteristics from the time she was a toddler, if the doctor listened and asked the right questions.

Once we had the correct diagnosis from a third doctor, who is a neuropsychologist and who did the complete evaluation, the psychiatrist asked me why I would want my child to have a diagnosis that no medication could treat. My reply, “Why would I want to treat her for something she does not have?”

Yes, medication can help some children as long as you have proper monitoring for side effects and as long as you have ruled out other medically researched options. Please note that many on the autism spectrum also have comorbidities that can be treated with medication. There are ongoing studies related to autism and sleep problems, so hopefully correct treatment options for this will be available too. I wrote about this in July on my Autism Myths, Legends, and Mysteries of Sleep post.

There are times when medication is appropriate, for instance when, there is a risk of harm to self or others. Even then it is important to monitor for side effects and to reevaluate once the patient is stable. Some medications can be safely weaned with medical supervision.

Rachel B. Cohen-Rottenberg, Trail Blazer 4

Rachel, who runs the wonderful blog, Autism and Empathy, sent me a PDF copy of her latest book, Blazing My Trail: Living and Thriving with Autism to review a while back. This is Rachel’s second book about living with autism. You can view my review of her first, The Uncharted Path: My Journey with Late-Diagnosed Autism by clicking on the link. I knew I loved her second book after a quick look, but I wanted to be able to do a longer review and finding time has been an issue until now.

Rachel shares more of her adventures in self-advocacy, talks about harmful medications, and shares some adaptations that have made her life happier. This alone would make this book worth reading. However, the part of the book I love the most is the way she works to deconstruct cultural attitudes about disability and offers suggestions to our society at large about needed changes. Chapter six addresses this in detail although Rachel intersperses it throughout the book.

I love Rachel’s comment on page forty-eight, “I’ve come to understand that one of the primary reasons that disabled people are so ostracized and excluded in our society is that we remind everyone that life is a messy, fragile, difficult thing.” She determines that in many ways she is fortunate to face difficulties now as she believes this is better than having lived a charmed life only to find yourself disabled due to aging. She talks about life’s difficulties, but notes, “Difficulty is not the same as impossible!”

I found myself nodding my head in agreement many times as I read. Those of us who experience autism whether, as a parent or directly can tell you that naysayers are a part of life with autism. Another favorite comment is on page sixty, “There are people who will never understand that some things cannot be overcome by will power.”

Chapter five beautifully addresses the issue of asking for and receiving needed accommodations and the painful realities of abuse that some with disabilities also face. She quotes someone she met over twenty years ago at a support group, “There is no such thing as better or worse when it comes to abuse. Once someone forces us to cross that line, we’re all in this together.” Amen!!! Thanks Rachel for sharing this along with the Judaism teachings that we are all born and die pure souls and that our essential nature is not changed by events in-between.

Rachel addresses another conflict within the autism community too as she asks the question, “Do we focus on making autistic people ‘indistinguishable from peers,’ or do we work to build a world in which all the people who fall outside the realm of ‘normal’ have equal access and equal rights?” She is not saying do not help autistic children to find ways to communicate more effectively and to navigate the world, but rather that our attitudes about normality need to change too.

The final chapter addresses Rachel’s solitary path through life’s journey in a peopled landscape where at times we find support that strengthens us.  

Disclosure/Disclaimer: I reviewed this book from a PDF copy received from the author.  No other compensation, monetary or in kind, has been received or implied for this post. Nor was I told how to post about the book!

Are Glee Writers Using the Autism Community to Improve Ratings? 6

Read what one blogger said, crown_of_weeds: Sugar, Self-Diagnosis, Appropriation, And Ableism: So Here’s What You Missed On Glee. Do you think they really are using the autism community for ratings? Is this really what our society has come too? I hope not. I really hope the writer did not understand.

Here is an excellent summary of different views in the autism community Debate Heats Up: Is Glee Making Fun of Asperger’s? | Child Mind Institute. There are people within the autism community who do not understand Asperger’s and there are professionals like Allen Frances who make things worse with this What’s A Mental Disorder? Even Experts Can’t Agree : NPR. Is it any wonder that girls on the high-end of the autism spectrum do not get the support and understanding they need?

Here is part of a comment I left on a blogger’s post this morning, “The news media, celebrities and others fight for the rights of sexual orientation, color, religion and even more severe forms of autism and other disabilities including Down’s Syndrome. Most people know what Down’s Syndrome is and most have heard and some are even getting that sexual orientation is not a choice for many. Yet even members of our family fail to understand my daughter. I have left churches that condemned other religions or those who petitioned against same-sex marriage so while your assumptions are valid, you made a leap that missed the mark when you assumed ‘tolerance has to be tailored to fit YOUR PARTICULAR disability or challenge.'” I speak out about injustices related to Asperger’s because people with a diagnosis of Asperger’s are a minority within a minority and girls with the diagnosis are even more of a minority. I speak out because the diagnosis is relatively new (1994), and it will no longer be used in a couple of years therefore, it is misunderstood more than most. Taking such a vulnerable group and making any type of joke at their expense is just wrong.

Please join my e-mail campaign to make a positive change if you agree with me. Find out how in my previous post Glee Needs to Apologize to Autism Community for Recent Episode.

The Right Thing to Do 6

Today I am grateful for support and understanding. Thank you to all of you who have e-mailed Fox and blogged about the recent Glee episode. I sincerely hope they respond in some way and try to make things right.  

I want to make clear that the opinions I express on this blog are my opinions not my daughter’s. There are times we see eye to eye and there are times we do not. Therefore, I ask that you do not try to drag her into the campaign to e-mail Fox. She is choosing to stay out of this and I ask that you respect her wishes.

Now, I know there are those of you who will ask why I am doing this if she is not on board with this cause. My reason is simple. I cannot be a quiet bystander when I feel something is wrong and my views of the world as an adult are different from my views at age sixteen. This is not to say my daughter is wrong and I am right for that is not the way I see it. Rather what I see is that in our generation there were people who thought Archie Bunker on All in the Family was funny and there were people who found it offensive. Some who thought it was funny still find it humorous and others no longer do.

Everyone has a right to their opinions. However, laughing at a group that is vulnerable should never be okay in my book and Allen Frances’ very public opinion that many with an Asperger’s diagnosis do not really have it and those who make very public comments that people with Asperger’s use it as an excuse for bad behavior makes this group vulnerable. Therefore calling someone “self diagnosed” does not negate the harm done to those with a diagnosis of Asperger’s. The writers of Glee need to show tolerance for this vulnerable group.