Sunday, June 3, 2012

The Autism Debate

This is going to be a completely unrelated post to most of the subject matter and content I've been covering of late, but it has been on my mind for a while and has been really bothering me.

The topic of autism is another one of those hot-button, controversial topics.  As a speech pathologist, I frequently hear about many interpretations of autism, from doctors to parents to researchers.  (*to self-disclose from the start, I am not a pediatric therapist in nature.  I do see pediatrics in some areas of my specialty, such as with dysphagia, dysfluency, or voice disorders, but at this point in my career I am mainly focused on diagnoses related to those older than the age of 18 and therefore do not typically treat many developmentally disordered/delayed/impaired children)  However, just by being in the career in which I have chosen, many people tend to ask questions about autism and other developmental delay concerns as overall, that is what speech language pathologists are typically viewed to treat only from a non-SLP/medical perspective.  I find that, at times, I need to keep up on that part of the literature to be able to answer the questions of my friends and family who hear my title and see me as somewhat of an expert opinion on the topic. 

There are two typical questions that I am asked in related to autism.  The first is, what are the signs and symptoms, a question typically related to the concern of if their child is displaying symptoms or has a question of having the diagnosis.  I find that the PubMed site is a really great place to start looking over symptoms and gaining some additional knowledge about autism.  There is a specific page on the PubMed Health site, found right here, that gives a good list of some of the specific characteristics that a person or child with autism may display.  Now, obviously, take this information cautiously, and if your child does something on this list, but only one, or maybe only a few small things on the list, it probably isn't a huge indicator.  However, if your child does more than just a few of these, it might be time to see your pediatrician/family physician and proceed to having possible early intervention (speech, occupational, or physical therapy) evaluations initiated.  Again, there are several categories on this list, and if your child has difficulty with some or all of say, the sensory area only, then they may alternately have a problem processing new or different sensory information, and may not be autism.  But, the list is a pretty good way to assess whether your child has characteristics or behaviors that may be indicated for further assessment.  Again, this is a REALLY brief skimming onto the surface of what autism actually is, but for the purpose of the question I am most frequently asked, it serves it well.

The second question that almost always follows what symptoms are there and does my child have autism is, 'What causes autism?'  I really, really wish I knew.  Not only because it would abate so much parental worrying, give us a clear idea of the picture we're really looking at, and be so much better for the outcome of the children who have autism diagnoses, but also because I'm pretty sure if I knew what caused autism I'd be sitting in my boat at my newly acquired lake house drinking a mei tai my cook prepared and my butler brought out to me.  

The thing is, we don't know.

There are several respectable sources that cautiously mention a few possible causes of autism.  The PubMed Health site mentions that while there are, "probably a combination of factors that lead to autism... [but that] genetic factors seem to be important" from the site I linked above.  Another one of my favorite sites to refer back to is the ASHA (American Speech-Language-Hearing Association, the association that certifies all speech language pathologists and audiologists practicing in the United States) site.  There is a nice page here discussing the causes of autism.  They also mention that while the possibilities of causes are quite large at this point, that the list may include but is not limited to, "genetic problems or syndromes, severe infections that affect the brain...and exposure to toxins or illness during pregnancy." These are a few of the credible sources I like to refer to when answering the question of what causes autism, and really, they don't tell you much.  This is an area that is being researched, but there are not any concrete answers yet.

In the mean time, I'll ask a simple favor.  

Please stop with the spreading of misinformation.

In this age, it is VERY easy to click a link, be taken away to a website whose credibility may be very sketchy, and be able to read an article explaining the 'cause' of an illness/disease/disorder/diagnosis.  However, you have to be a smart consumer.  As for me, I love to read a good meta-analysis (paper that compares data from MANY different studies) of larger single study size (more participants) double-blind (neither the researcher nor the subjects know who is in the control and who is in the experimental groups) set up.  And even with those studies, you really have to look carefully to compare what the sample sizes of subjects were, and how each of the smaller studies set up, controlled, and ran their experiments, as well as what statistical analysis they used to assess/run their results.  If you are interested in learning how to be a good research consumer, I can direct you to a wonderful course I took during my master's degree in statistics.  (Thank you Dr. Huber for teaching me how to really well analyze a study!  Your teachings have been extremely helpful to me thusfar!)

If you're not interested in learning how to know what the 'good' research and the 'not-so-good' research is, and how to differentiate the two, then, I'd really recommend you just leave that part to the professionals.  Because believe me, your doctor, your therapists, if they are good at what they do and care about what they do, they are following it closely.  

Otherwise, we have people posting all day long on social media sites with articles that claim to have found the autism vaccine or found the cause of autism, even found the cure to autism.  A lot of those articles are not only false, but they are very harmful and hurtful to the parents of children who already have autism.  Can you imagine, if your child contracted a disease (where the cause was yet still unknown), and your facebook friends were constantly posting articles as to how YOU as a parent made a choice that caused your child to become sick?  I never quite understood how heavy the weight is to carry, how much you blame yourself for every little good and bad thing your child does, until I gave birth to my son.  But let me tell you, if you don't already have children, the weight can be astounding at times.  

If you are not very highly qualified in studying the research, or completing/running the research, then really, it is probably not your place to pass along false information that only hurts the families and parents around you, who I will tell you with 100% assurance, are trying their very hardest to provide everything they can to help their child, while at the same time struggling with the diagnosis, what it means for their child and their family, and constantly questioning the unknown cause themselves.  

And, there's my two cents.  Take it or leave it.


♥ the naptown organizer

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6 comments:

  1. Thank you for writing this! As a parent of a child living with Autism at times it can get overwhelming to hear the "well meaning advice" from people. Everything from stop giving your child any and all processed food to I told you, you shouldn't have vaccinated him. Autism has such a varied range of individuals that there is a saying in the community of “If you know one child with Autism, you know one child with Autism”. It is really great to see someone spreading facts vs fiction!
    Nomi

    A Frog, a Monkey & a Ladybug

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  2. What do you think about the difference model vs. the disorder model?

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  3. ThenaptownorganizerJune 5, 2012 at 9:44 PM

    Let's see if I can answer you here from my phone. I agree with Nomi, that it is SO variable. For most people with autism, I think it is a combination of a little of both, disorder/disability and difference. For those with Asperger's, yes that could be thought of as more of a difference. However, as a service provider, I would hesitate to stand behind any model that may provide increased difficulties for an individual to obtain services, and I'm afraid that the difference viewpoint may cause some individuals barriers to obtaining treatment if they do happen to be interested. For example: I'm a SLP. It is pretty widely known among people who work with SLPs that we tend to be extremely type A, organized, scheduled individuals. It is a known difference of many SLPs. However, for some, it can also be a disorder/disability. And it would be a sad thing if people viewed that as just how SLPs are and therefore you could not qualify for treatment for it if wanted. Obviously it isn't the same situation, not in the least, but just because you function under a certain title, whatever the title may be, I don't believe that should give your insurance company the chance to turn down covering your services if you want them because you are just different.

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  4. I know this is an older post but I absolutely love it (as well as your blog in general)! Kudos for spreading facts rather than what any Joe-Schmo can post on a website and claim to be true. I have respect for women like you who are able to see that in the medical field, there is not always a clear answer. Sometimes, we have to just answer "I don't know yet" unfortunately. Very well written post! Thank you!

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  5. Thank you Candy! It is very frustrating for me to see people posting 'real information' about autism that has absolutely no scientific/researched basis, mainly because I know exactly how much it hurts those families who know or are related to persons with autism. Parents of children with autism don't need our criticism, don't need our judging, and don't need our speculation. They need our support.

    Thanks again for your comments on the blog, it's a newer blog, so if you like it, please share it with your friends and family! A little word of mouth goes a long way! :)

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  6. I know the feeling! Not quite as advanced as your background, but I have a minor in special education and it just irks me to no end when I see articles that have no basis, or even scientific evidence that isn't really developed (not sure if you've seen the most recent one that drinking is now "okay" when you're pregnant). I agree 110% that support is the #1 thing needed!

    I absolutely love the blog! I will recommend it to anyone who asks for a good read! :)

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