Saturday, May 31, 2014

Define Technical and Non-People Oriented For Me Again?

For those that haven’t seen it yet, there was a new autism study out of the University of Texas that was presented at the International Meeting for Autism Research in Atlanta.  You can read a press release about it here:  
The study looked at the occupations of fathers and assessed whether their occupation could indicate an increased risk of having a child with autism.   Interestingly enough, there did seem to be a co-relation.  The quick summary of the study is this:
-        Fathers who work in the field of engineering were 2 times more likely than average to have a child with autism.
-        Fathers who work in the financial industry are 4 times more likely than average to have a child with autism.
-        Fathers in the healthcare industry are 6 times more likely than average to have a child with autism.
These are interesting findings and I think they could give researchers some valuable information if they follow them up well.  Unfortunately, I see some major problems with the way the results are interpreted.  They categorized the occupations into "those in non-people-oriented jobs (technical) or more people-oriented jobs (non-technical)”   in order to see if fathers in technical jobs are more likely to have a child with autism.

If the hypothesis was that those in ‘non-people oriented jobs’ were more likely to have children with autism then it appears to me that this study disproves that.  Don’t jobs in healthcare qualify as “people oriented jobs” ?  Doctors, nurses, therapists, chiropractors and phlebotomists, work with people all day.  How does that qualify as ‘Non-people oriented’?
I’m also confused about the categorization of those who work in the finance industry.  Okay, they work on the computer a lot, but don’t we all these days?  People in finance are attending meetings, hosting potential investors and spending a whole lot of time on the phone using their ‘people skills’ to make deals, to get information and to foster trust.  Is there something I’m missing here?  How could this be a ‘non-people-oriented’ occupation?

Yes, engineers tend to work more with the technical than the personal, but they have a smaller incidence of children with autism than that of medical personnel and financiers.   This is hardly a slam dunk!

According to this press release, the researchers are responding to the results as if everything lines up with their hypothesis.  “...we speculate that people who choose these technical fields do so because their brains are wired differently. They also tend to be more antisocial, prefer to focus on one thing at a time, and not talk a lot. We see those traits in autism too,"

So they have high school level occupational stereotypes dubbed as ‘science’, they broaden the definition of ‘technical’ to be anything that involves math or science and regardless of the face time people in these occupations spend they call them “non-people oriented”.  Voilà! Their findings show that their hypothesis is correct!  Autism is inherited from geeky parents!  Stereotyped personality traits from one generation become neurological diagnoses in the next.  Who funded this study? Are these really the greatest minds? Are these the people we are counting on to help our kids have a brighter future?

When you think of engineering, finance and healthcare do you think “Those are professions for anti-social people who don’t like to talk,”?  I know I don’t.  People who chose those professions tend to be smart, goal oriented, driven, hard-working, well-educated and generally not averse to making good money.  They may actually be interested in the work that occupation offers, as opposed to looking for a way to avoid people.   Instead of deciding that their brains are wired differently, and therefore autism is inherited, why don’t they look at the environment or lifestyles of people who work in engineering, finance and healthcare.  Is that just too crazy to consider?

I guess it is, because there is no mention of looking into the environment of these professions.  Instead they are going to use these finding so that “medical professionals can consider parental occupation as one of the factors for autistic-like behaviors.”  So now a father’s occupation is counted as a child’s ‘behavior’ and therefore could be part of the reason for giving that child a neurological diagnosis.  Got it!

The person who wrote this press release goes on to say that autism affects 1 in 68 children and “most of them are diagnosed as an adult.”   Okay, the inaccuracy here is bordering on ridiculous.     The one in sixty eight number only refers to the year 2002 birth cohort that the CDC's prevalence reports recently published.  Those people are now 12 years old, hardly adults.  As far as I am aware, there is no data indicating that the majority of autistic people are diagnosed as adults.  The context of the press release makes it sounds like this pearl of wisdom comes from the CDC.  (It does not.)
Finally the article explains “Experts believe that the latest trend of finding partners at work might be behind the tripling of autistic cases since the 1960s. The cases have particularly skyrocketed in California's Silicon Valley, where partnerships between engineers, physicists and mathematicians have been increasingly observed.” Insert face palm here.

So meeting your partner at work is “the latest trend”?  Really?  Hey, my parents met at work in 1963.  I don’t think they even knew they were setting the trend for the 21st Century!   That explains the explosion of a neurological disorder?  Technical people just weren’t hooking up before the 1960, but now the Silicon Valley is offering a dateway to having autistic children. (Tripling comes nowhere close to describing the increase in autism incidence, but I’ll leave the math to those in ‘non-person oriented’ occupations.)
Is anyone looking at the environment in the Silicon Valley?  Lifestyles?  Are there any trends there other than meeting your partner at work?  If children with autism are more common among technical people maybe we should look at the effect of technical gadgets on our health?  I guess I just don’t get how genetics and ‘non-people oriented’ professions work.  L

Friday, May 30, 2014

My Love-Hate Relationship with the Anti-Vaccine Movement

First off, I know what some people will say about the title of this entry.   “We’re not anti-vaccine! Stop calling us that!”  In that case, please come up with another name for yourselves.  Give yourselves  a name that identifies your movement so that when you are referred to, people will know who you are.  If I called you the Precautionary Vaccine Movement, few people would know who I’m talking about.  So please, get a name and make it stick.  Until then, I’ll refer to you as the Anti-Vaccine Movement (AVM).  I recognize that it may not be literally accurate, but there will be no doubt about who you are.
Here’s why I love the anti-vaccine movement.  They are protecting everyone’s right to make medical decisions for themselves and their children.  They take down the façade of the demi-god like authority of the medical system and the pharmaceutical industry and they encourage people to do their own research.    The truth is that the people in general are not fully informed of the choices they are making or even told that they have a choice when it comes to risks and benefits of medical interventions.  This is especially true when it comes to pharmaceutical products.   So I thank the AVM for raising our awareness, encouraging us to make our own choices and making sure that we continue to have the right to make those choices. When it comes to autism, those who are part of the AVM are also the people who believe in helping the body heal .  They are the ones promoting therapies and nutritional supplements.  They are the people that believe autism is an environmentally induced condition as opposed to a genetic inevitability that little can be done about.  They are the people who believe that autism is an epidemic that was almost non-existent in previous generations, not just undiagnosed.  They are the people that believe autism is a health issue, not just a learning disability.  They are the people that believe our children can heal and want to increase the accessibility to medical intervention and therapies to do so.  They are the people that have no tolerance for another study on maternal age and autism.
So what’s not to love?  The difficulty I have with the AMV is the hyper-focus on vaccines.  Specifically, a belief that if it weren’t for vaccines there would be no autism epidemic.  Yes, vaccines are not completely risk-free.  Parents should be fully informed of the risks associated with the choices they are making for their children.  A study comparing the health conditions of vaccinated vs. unvaccinated children needs to be done.   However, while we are hammering on the risks of vaccines there are plenty of other things that could be and should be investigated.  While the AVM acknowledges that other environmental factors could be contributing to the autism epidemic there is little interest in researching them;  they think they have the answer.   Many of them dismiss any study that is not about vaccines.   You can often see sweeping statements on AVM blogs that are passed off without reference or question.  Here is just a small sampling.
The rate of autism in unvaccinated children is 1:10,000 – Really?  Weren’t you just complaining about the fact that there is no study of unvaccinated kids and autism?  If Paul Offit or a member from the pro-vaccine movement said “Unvaccinated children get autism at the same rate as the general population,” wouldn’t you be asking for a specific reference?  So why don’t you ask that one be provided when a similarly sweeping statement is made by someone on your side?
Autism levels have increased at the same rate of increased vaccinations  - Okay, not just similar but the exact same rate?   Haven’t more informed parents been choosing not to vaccinate, yet autism rates are still rising?  Hasn’t the sum total of thimerisol in vaccines significantly decreased over the past few years, yet again, autism rates continue to rise?   How can you say the rates are the same?
Vaccinations are the main cause for the increase in autism.   This is, at best, a huge overstatement.     Maybe, there is some evidence that vaccinations may contribute to autism is some cases, but the conclusion that vaccines are the main cause of autism is blowing the evidence –even the anecdotal evidence -way out of proportion. 
Unvaccinated groups like the Amish have autism only in cases of environmental mercury exposure:  So every known case of autism among the Amish have an unquestionable link to mercury exposure?  Do you have a reference for that?  Could there possibly be any other difference between the lifestyles of the Amish and the modern American family other than their vaccinations and mercury exposure?  Like food?  Or the fact that they don’t use electricity?  Or the chemicals and pesticides they may not be exposed to?
Between 98%- 99% of cases of autism are due to vaccine injury  -Of course, there’s no epidemiological evidence for this one either.  But if it is true, can they explain what’s going on in Cuba for me? Cuba reports a rate of autism at only 0.00168 percent while the U.S. rate stands at 1.13 percent.  About 99 percent of Cuban children are fully vaccinated versus about 85 percent of American children.  Both nations vaccinate for similar diseases with very similar vaccination schedules.  (The Cuban childhood vaccination schedule includes protection against 13 diseases in 11 vaccines in a total of 34 doses while the United States requires 11 vaccines in 36 doses.)  I know what you’re thinking: we don’t know if vaccines in both countries contain precisely the same ingredients and we don’t know the precise definition of “autism” in Cuba.  True enough, but we’re talking about a HUGE difference in incidence!  Rates of autism are 298 times higher in the US than in Cuba.  You would have to show some significant differences in the ingredients or diagnoses to account for that kind of disparity in statistical data.  If the Cubans did not vaccinate their children the AMV would be doubtlessly pointing to them as proof of the vaccine autism link.  When the shoe is on the other foot, they are less impressed.
Vaccines do not cause every case of autism, but they have indeed caused the autism epidemic – An epidemic is defined as a certain disease in a given human population that substantially exceeds the expected rates of incidence based on recent experience.  So the increased numbers of autism are almost entirely due to vaccines ?  And the number of autism cases that do not involve vaccine injury are about what we had expected to occur?  On top of the fact that there is no evidence to back up this statement, it is extremely dismissive of people whose cases do not fit a particular agenda.   
There is a growing double standard for “evidence” or “proof”.  The validity of a study as determined by the AVM is based more on whether people like the conclusions than if the research was done well.  Just the title of a journal article is enough to have research dismissed. The study entitled “Residential Proximity to Freeways and Autism” was quickly rejected by many in the AVM based on the fact freeways have been around for so long and the increase in autism numbers is relatively recent. There was no consideration that the environment near or around a freeway now may be in some way, different than in past decades.   Like many studies before it, it was labeled a distraction to obfuscate the real cause: Vaccines
Part of the reason this vaccine emphasis bothers me so much is that I sense that the parents of the AVM see their ‘vaccine injured’ children as different from other children with neurological disabilities.  Their children were poisoned; their children were not supposed to be this way. God didn’t intend for this to happen to them.  I take this very personally because my daughter was not vaccinated at the time of her diagnosis.  Not surprisingly, many in the AVM don’t like to hear about her case.   First, it doesn’t support their cause and second, it introduces the possibility that many of children they believe where adversely affected by vaccines were not.   
To some, the fact that she has autism and has never been vaccinated has a simple answer.  “Her case must be genetic.”  This puts her in a different category.  It excludes her from the autism epidemic that is hitting this generation.  As if she were supposed to be autistic. As if looking for environmental factors wouldn’t help her.   There’s a sense that the vaccine injured are more entitled to a better quality of life – Their condition is not genetic. Pinpointing the cause primarily on something injected into a child at a specific time during their growth and development fully supports this distinction.  Without this single point of cause, the contrast is fuzzier.
Regardless of the cause, we should never see one child as more or less worthy of neurological well-being than another.  All children are entitled to the potential for a good life.  The ‘vaccine injured’ are no more or less deserving than any other child with autism.  Nothing should be dismissed just because it doesn’t fit with the prevailing theory.  We need to keep searching.
Generation Rescue is a group that is generally supported by the AVM.  They conducted a phone survey to determine the causal link between autism and vaccines.   The study was not without its flaws but there were some interesting conclusions.  According to GR’s results, vaccinated boys are 61% more likely to have autism than unvaccinated boys.  Vaccinated girls are no more likely to have autism than unvaccinated girls.  If we assume that this study is accurate, (and that is questionable) it still doesn’t find vaccines as the primary cause of autism.   In simple numbers, if there are 100 kids with autism, 30 of the cases are likely related to vaccinations,  70 of them are not. Those 30 cases are extremely important and we should continue to work to get answers for them.  The other 70 cases are just as important.  They shouldn’t be put up on a shelf waiting for the pro and anti vaccine movements to hash it all out. 
It appears that we are not getting anywhere arguing about vaccines.  Both sides are entrenched in what they believe and the autism rates continue to rise.  We could (and should) do more studies on vaccinated vs. unvaccinated groups of people but it seems likely that either side would dismiss results that do not fit their agenda.   If we’re not getting anywhere with vaccine research, how about looking at other environmental causes?  Fire retardants, food preservatives, pesticides, herbicides, plastics, food processing, arsenic in our rice, air pollution, GMOs, radiation, over-sterilizing, lyme disease, endocrine disruptors,  parasites, the list goes on and on.  The EPA and the FDA have no idea exactly how many chemicals are used in consumer products, nor what products they are used in.  Shouldn’t we require that their standards change?   Don’t these things warrant some research?  Couldn’t they be a huge piece of the autism puzzle?  The efforts in this area are minimal at best and there should be a call for more efforts to find environmental causes of autism.

Like a growing number of people, I believe that there are several causes of autism.  Vaccines most certainly may be one of them, but if they are, that’s only one piece of the puzzle.  If the  AVM dismisses people who don’t agree with them 100% or whose experiences do not reflect their own, they will be taken less seriously and find themselves with diminishing support.  This is already happening.  The autism community needs to join forces with people who will help our children achieve a greater quality of life, recognize the seriousness of this condition and prevent autism rates from continuing to rise.  Sometimes that will mean looking into vaccines.  Sometimes that means pursuing research in other areas.  In the meantime, let’s all keep an open mind.  None of us has all the answers. 

Tuesday, May 27, 2014

Can I Pee In the Woods Please?

We came out of the planetarium and Naomi said “Can I pee in the woods please.”
“No, Naomi you have to pee in the potty.”
“No pee in the potty.  Pee in the woods.  Can I pee in the woods please?”
This is a hard one.  I know I shouldn’t encourage her to pee in the woods, but my chances of getting her to pee in the potty are zilch!  I think about it for a minute.  “Okay, let’s go.”
We get behind the building where there are several nature walks that I don’t think I’ve seen anyone ever take. We walk a little while in the woods until I get to a spot where I’m pretty sure that no one can see us.  I help her crouch down and hold everything out of the way so nothing gets peed on.  And off she goes.
Naomi has an extremely sensitive olfactory nerve. This sensitivity to smell comes and goes.  She has begged me to bring her to the mall and then been so turned off by the cologne counter that she insists on leaving as soon as we get there.  At one point in time or another, stores, restaurants, churches have all had the ‘smell effect’ on her.  She’ll walk in, cover her mouth and nose and say “Yucky smell!”  I can’t really tell when it’s going to hit.  Washrooms in general, even clean ones, have a smell that just doesn’t sit right with her.   This isn’t the case all the time.  Sometimes she will use a public washroom without complaint.  Other times, she can even open the washroom door.   So, when she wants to pee in the woods, I know it’s about the smell.   If it hits her that way, I can’t really talk her out of it.  It just hits her that way!   So she pees in the woods.   I just cross my fingers and hope it doesn’t get to be too much of a habit. (It does seem to be heading that way.)   For now, the smell of cedar trees or rotting leaves doesn’t seem to bother her and I guess she wants to do things the way nature set them up!  So she pees in the woods.

Saturday, May 17, 2014

Is Anybody ‘Less’?

Different…Not Less.  I see this phrase often.  It’s written on Facebook posts and blogs about autism all the time.  It is the title of one of Temple Grandin’s books,  which I have admittedly not read.  The phrase, I assume, is meant to indicate that having autism is just one of the many characteristics of human beings and being autistic is no worse than being neurotypical just as being black is no worse than being white, being female is no worse than being male or going to Holland is no worse than a trip to Italy. (I had to use that analogy.)  Like our biodiversity and our cultural diversity autism should be treasured for its unique addition to the human species.
Pointing out that people with autism are not “less” must indicate that there is a group of people out there that we can consider ‘”less” and we need to separate their identity from those with autism. So if people with autism are not less, I have to ask… Who is ‘less’? 
Does this mean that people with conditions including Down’s syndrome, cerebral palsy  or Prader Willi syndrome are ‘less’ ?  How about people with fetal alcohol syndrome, dyslexia or  Alzheimer’s Disease? Do we consider any of the people with these conditions ‘less’ while people with autism are simply ‘different’? Or do we also consider these conditions part of human diversity? 
Are the mentally ill ‘less’? I often hear representatives from the autism community emphasizing that autism is NOT a mental illness.  While this is true, the purpose of the distinction usually isn’t about the conditions being ‘different’; They come across as if people with autism are superior to the mentally ill.  People with schizophrenia in particular seem to be a good ‘less than’ target.  You don’t have to think very long and hard to find groups that target the mentally ill as ‘the problem’, as opposed to a group of people that are in need of solutions.  
So if we see a person as having a disability or disorder does that mean we see them as “less”?  I argue that it doesn’t and it shouldn’t.  Everyone is entitled to being treated with dignity and respect no matter what their physical or neurological condition.  A group that cries out for acceptance should show how accepting they can be of others as opposed to setting themselves apart.
People that would like to reduce or even eliminate the effect of autism on themselves or others, don’t think of persons with autism as ‘less.’  They want more for those people.  They want what everyone wants for themselves and their children: deep relationships, a good job with good pay, independence, and a meaningful way to participate in the community.  There are people with autism who have been able to achieve these things in their lives, and I’m happy for them, I would even love for my daughter to be included in this group.  But don’t deny that for many, autism prevents these things from ever being a part of their experience.   Just because some of us want more for people with autism, doesn’t mean we think of them as less.

Thursday, May 15, 2014

On Dogs and Descrimination

Naomi’s newest obsession is dogs.  She has a little fear that she has to get over, but it is definitely overpowered by her fixation.  It started during our sojourn in Atlanta.  We would wait outside the fenced area at the dog park and as each owner  came out she asked “Can I pet the dog?”   I must say for the most part, dog owners are kind and patient.  Naomi would approach and retreat a few times until she could finally pet their dog.  Over time, she was getting more and more comfortable with dogs and she’d  been pestering everyone in the neighborhood that took a dog for a walk.  We had to seriously consider the next step:  Getting a family dog.
I had a number of ideas about where we should go to find one, but a friend of mine suggested that we contact a local dog therapy business.  I didn’t think that we needed a therapy dog and a lack of financial resources and fund raising skills would put it out of the question anyway.  “You don’t have to get a ‘therapy dog’ my friend told me.”  They always have a few that don’t keep up with the level of training that servoce dogs require and they put those ones up for adoption.  We got one that was too docile for just $200.00.” 
This sounded like a good possibility so I wrote them an email.
I heard that XYZ Therapy Dogs has some dogs that are not fully trained that can be bought for an adoption fee.  Is this true?  My 8 year old daughter is autistic.  We do not feel that we need a fully trained therapy dog, but we are looking for a family dog and we are interested if there are other dogs available.
Many thanks,

They wrote back the next day:
Most of the dogs we put up for adoption are not appropriate for a child with Autism. The few who are typically are placed into homes where we already have a working service dog and the family needs another dog for their children who are typical but can’t get just any pet dog because of the child with Autism.  I would suggest since your child does have Autism that you consider a service dog. 
Does anyone else bristle while reading this?  Yes, I understand they are a business and their business is therapy dogs which take time, money and resources to train, so that’s what they are going to promote.  BUT in this email, they essentially concluded that although they knew nothing about Naomi except that she had the ‘autism’ label, any dog other than a service dog would be inappropriate for her family.   This is an organization that is supposed to advocate for our children and this is what they think?   They so clearly could have said essentially the same thing without suggesting I was making an inappropriate move in looking for a family dog.  Here, XYZ Therapy Dogs, this is just one example of what you could have said:
We don’t have many dogs for adoption and when we have them, we give priority to families that have a working service dog. Service dogs are our focus and it is unlikely that we will have additional dogs available for adoption.  Please let us know if you should become interested in a service dog.  
This way your telling me that we won’t be able to adopt a dog from you without saying “NO WAY CAN YOUR FAMILY HAVE A REGULAR DOG IF SOMEBODY IN IT HAS AUTISM!”
Many families with autistic children have regular family dogs and they do just fine.  XYZ Therapy Dogs obviously doesn’t want to acknowledge them.  So fine.  Screw you XYZ Therapy Dogs!

My next move was to go to the local library with Naomi to take part in “Tail Waggin’ Tutors” program.  Essentially, it’s an opportunity for children to read to therapy dogs.  I had told Naomi where we were going and she was excited. 
We walked into the room with dogs as directed by the librarian and a woman came in after us.  “You can’t just go in there!” She scolded.
“Oh, I’m sorry. We haven't been here before. How do we go about this?”
“You have to sign up for a time.”
“Okay.  How do we sign up? “
She lead me over to a schedule on the wall.   “Does she read independently,’ she said, gesturing toward Naomi.
“Well then she can’t participate.”
“She has to be able to read independently to see a dog?”  I asked incredulously.
“Yes, because it’s tutoring.”
“If she could read independently, she wouldn’t need a tutor.  She has a disability and you’re going to exclude her because of it?’
The woman shrugged.  “That’s how this program works.”
“That is awful and it is cruel,” I said and we walked out of the children’s area.
To be clear, there were lots of time slots available.  They would rather that they go unfilled than give them to a child with a reading disability.  After all, why should therapy dogs can’t be used on children with disabilities. 
I couldn’t let this go.  I told the librarian on the way out.  She was a very kind woman.  She gave me information on who to contact about my concerns and we left.

I haven’t called yet.  I wish I had her email.  It would be easier to write.  They may make an exception for us and tell us we can come and participate next time, but I don’t think I want to.  Once you’ve complained you become ‘that parent’ -  the pushy one who can’t take ‘no’ for an answer.  If Naomi is not absolutely perfect during the next Tail Waggin’ time, I imagine the organizers will roll their eyes at each other and I will feel self-conscoius.   But I still will call.  I want the next disabled child who goes to that program to be allowed to take part.  So, it won’t be for Naomi, but it will be for some one.  Sigh* Another ‘teachable moment.’

So here's the bigger question - Why all the trouble with Dogs and people with autism.  Why do dogs have to be rigorously trained to even live among them? Why do children with reading disabilities need to be filtered from their programs.  If people with ASD deserve to be seen as equals and integrated into our society doesn't that society include dogs?  We've got a long way to go. 

Monday, May 12, 2014

Being nice really isn’t enough

“Did you have any other questions about Naomi’s behavior?”  The young woman asks me. 
“Nope, not really,”  I answer.  We sit there in a moment of empty silence.   The young woman, Samantha, is my counselor.   Of course, I have tones of questions about my daughter’s behavior.  I have no questions that she can answer or offer any insight into.  I figured this out soon after meeting her.   She is a nice person.  She’s 20-something with long, black hair.   She has the letters after her name that qualify her to bill insurance.  With regard to autism, I’m guessing she’s had a few intensive courses, read a few books, looked at a few websites, taken part in some on- the- job training and voila!  She’s an autism counselor!
When Naomi’s therapy center told me that they offered counseling for parents that was covered by insurance, and encouraged me to try it, I thought “Why not? ”   But I learned there are  plenty of reasons.
It’s not Samantha’s fault.  As I said, she is a nice person and she’s trying hard.  She went through years of education to get to where she is now and she’s filling an open position for this job.  Still, I can’t help but feel mildly insulted at the suggestion that this girl young woman is going to give me advice.  She has likely spent the last 6 years studying various things like sociology, math and women’s studies.  When she wasn’t into her studies I imagine she was taking part time jobs, plugging into social media and pursuing a social life.  That’s what college students do.  I, on the other hand, have been doing what full time autism moms do for the past six years: Sleep deprivation, DAN! Doctors, ABA seminars, RDI, PECS, CCDT, Play Project,  AIM, special diets, IEP meetings, support groups and full time responsibility for one beautiful but very high maintenance little girl.  No, I didn’t get letters after my name for it, but does it make any sense that Samantha should be giving me advice?  Does it make sense that when she offers me another information packet from Autism Speaks I have the urge to crumple it up and throw it at her head?   Can anyone understand that when Samantha offers me some insights my first impulse is to say “You honestly think that never occurred to me at some point over the past 6 years?  You think I’ve been waiting all this time to hear this overwhelmingly obvious observation from you?”   Of course, I don’t say that.  That would insult her and help neither of us.  As I’m saying (for the 3rd time now) Samantha is very nice.
The advice that she offers is so common it’s almost become cliché.  “Take care of yourself” and “Get out more”, as if these ideas have never occurred to me.  When I ask about time, money, respite care, sleep and how the hell the laundry gets done she has no answers or she generously offers up my husband’s time – as if he had any –as if this also isn’t something I would have thought of.
 It’s a part of something fairly common that autism parents experience.  The assumption is that after years of intensively living this experience that we know nothing.  People watch an episode of Oprah or Dr. Phil and generously share their newly acquired autism wisdom with us.  Others offer their ‘help’ in sharing what they have learned after a distant relative was diagnosed with autism.     They give us some anecdotes about a treatment that is getting rave reviews without any awareness that it’s pretty unlikely that we haven’t heard of it or  perhaps we have even already tried it.  Finally, they offer inspiration by telling us the story about the boy that graduated from university at 16 and has autism.  We don’t have the heart to tell them that the story doesn’t make us feel better.   They just don’t get it; Although they too, are usually very nice.
Samantha does have one thing that most friends and professionals don’t.  She is a good listener.  So once a week I go in and vent my frustrations knowing that she’s not going to be able to offer me much to do about them.  I think with time, she will be a good counselor.  She may even be a good counselor for those that are new to this game.   She is starting to ‘get it’, but she doesn’t really know what to do about it.  So far, offering another Autism Speaks packet is the best she can do.    She’s at a training stage, and with time as scarce as it is, I don’t want to keep offering up my time so she can learn while billing my insurance… But Samantha really is very nice.
It will be awkward for me to stop the sessions with Samantha since she works at Naomi’s therapy center.  Awkward or not, I’ll go ahead and make the break.  All in all, that’s not a big deal. Still, I can’t help but wonder: What if another parent has a bigger problem?  A lot of autism parents have extremely complex and serious issues to be dealt with, and seeing a counselor may their last Hail Mary.   There could be serious consequences if all that the counselor can do is listen, nod and offer a packet from Autism Speaks.  Think Alex Spourdalakis, Sky Walker or Kelli Stapleton.  Those are the cases that an autism counselor really needs to be ready to deal with and Samantha is not.  Although therapy centers and clinics are not likely to be open to my advice, this is what I would say to them before they start to offer autism counseling to parents.  Assume the parents you work with are well informed, make sure your counselors understand the serious nature of the issues that they may be confronting and make sure they have significant experience working with children with autism before they start telling parents what to do.  Good intentions and being nice just won’t be enough. 

Friday, May 9, 2014

Our Experience With The MRT Study

As anyone who follows this blog probably knows, we entered Naomi in a study for MRT - Magnetic Resonance Technology.  I've been interested in this since I saw John Elder Robison  participate in a  study on TMS Transcranial Magnetic Stimulation - a kissing cousin to MRT - in 2008.  When this oppotunity came up, we took it.  We've been in the Atlanta area for the study and we just got back. This is our summary of the experience.  

Naomi finished her 10 week MRT trial a week ago.  I am having a hard time writing about it.  Throughout the 10 weeks I thought of a few things I wanted to write, but I wanted to try to keep from judging anything until we were done.  I also didn't have any writing time since Naomi wasn't in school.  
The study started off with an EEG.  It was a little tough to get Naomi to agree to wear the “hat” for the EEG and then close her eyes and relax as they recorded her brain waves, but we got it done!  We went through different questionnaires with the doctors and did blood and urine tests on Naomi.  Once the EEG was assessed the treatment plan was set up, Naomi started getting MRT treatments.  As far as I could tell it was pretty simple. They set the intensity and frequency of the coil, and identified a position on Naomi’s head for placement.  The computer was set so that every 60 seconds there was a chime to alert the technician that the coil needed to be in place.  “Head up, Naomi,” The tech would usually say, just before bringing the coil to her head.  Then for 6 seconds there was a clicking sound after which we could rest for another minute before starting the process over again.  The sessions were 30 minutes long and we did them every day except Sunday.
The doctors told me to make sure she got an hour of natural light exposure every morning before 9am.  Even on days when it was raining they said we should just go out on the porch.  The reason was that natural light would help Naomi make melatonin 12 hours later and thus help improve her sleep.  I quickly found out that I had been naively optimistic about the weather in Atlanta, especially the weather before 9am.  Because of the elevation, nights and mornings were cold, and I hadn’t brought hats and gloves. We went out every morning, but not always for an hour.  It was just too cold. In spite of following directions, Naomi still wasn't sleeping well and often got up in the middle of the night.  At home we are a late to bed, late to rise family.  Naomi goes to school late, so it works well this way.  Our new schedule was bed around 9:00pm.  It usually resulted in Naomi waking up in the middle of the night for 2-3 hours  and then falling back to sleep until around 6:00am.  This was not working for either of us.   Over time, I let her sleep later and we relaxed the doctor’s rules, We went out every morning, but it usually wasn’t done before 9 am.  We went back to our late to bed and late to rise schedule and her sleep was better. 
Naomi was a little resistant to the treatment at first, but after a couple of days the tech had gained her trust and she became comfortable with the routine.  I was extremely grateful that she was very good natured that first week and adapted well to settling into life in suburban Atlanta.  I don’t know how I would have survived that first week otherwise.  Very soon after starting treatments I noticed that Naomi became much cuddlier. She wanted hugs all the time: in the grocery store, in a parking lot, in the middle of dinner, as she fell asleep and first thing in the morning.  I joked that she was making up for the last 8 years of avoiding cuddles as much as possible. 

In those first 3 weeks, I kept looking for changes, but I didn’t really see any other than the cuddles.  She was a little calmer – not really different from herself, but just like herself when were going through a good stage.  It was hard to say if it was the treatment, being in a different place or just plain good luck!  Overall, I was guessing we were part of the placebo group.  (There were 2 groups that lasted 10 weeks.  One would get a placebo for the first 5 weeks, and then treatment for the second 5 weeks.  The other group would get treatment for the full 10 weeks.)  Then there was an error in the treatment and Naomi, of all people, was able to identify it.  “Turn it around!” she said referring to the coil.  The tech checked the treatment plan and got flustered.  It was clear something had to be altered.  It was done quietly and the error was quickly corrected, but this made be believe we were part of the treatment group.   It’s possible that Naomi had just felt something unusual and was actually asking for the sham side of the coil, but I doubted it.  We’ll find out in a few months if Naomi and I were right.. 
In about the 4th week, Naomi’s aggression increased.  It wasn’t particularly awful, just like Naomi during those not-so-very-good periods.  She would usually avoid hitting me and instead hit the car seat or the furniture or even herself.  This was still not ‘good’ but I know when she is not hitting me she has a little more self-control.  I figured that as long as she could keep it from getting overly violent, we’d be okay.   One day the tech witnessed Naomi kicking and the kick happened to hit me.  I don’t think that was Naomi’s intent but that’s what happened.  The tech consulted the doctor and decided to decrease the intensity of the treatment. Naomi continued to have the same level of aggression for a few days in spite of the changes and then things started to get better.   The clinic kept the lower intensity for a little over a week and then I suggested increasing it up to the regular level.  When they did so, she seemed to respond relatively well.  Again, she was Naomi, as she is when she is relatively relaxed.  There were a few moments of impatience or anger, but no huge outbursts.  She showed some signs of tightly shutting her eyes or holding her head during the treatments, but she never complained.  The techs did a few variations in the intensity depending on her behavior, but overall things went pretty much the same.   It was during this time that we went into the 2nd five weeks – the period when we knew we were getting treatment.    I still didn’t really notice anything. Transitions?  Not really.  Improvement in imitation?  I don’t think so.  Visual acuity?  Nope.  Language?  Nope.  Every once in a while I would notice some little thing and think “Maybe…..” The assessment reviews we did with one of the doctors really encouraged me to err on the side of seeing progress, but overall, I really didn’t think so.  Even when Naomi is not getting treatment, we notice mild changes and what I was seeing didn’t seem to exceed what I had seen in the past.   Naomi was still very cuddly, so I hoped that this one change would continue and I started looking forward to going home. 
So we had a few relatively good, but not noticeably wonderful weeks.  Then around the 8th week things got crazy.  The aggression started as it had before, outbursts of frustration, crying hitting furniture etc.  Then it got worse- much worse.  Huge battles over not changing a DVD quickly enough, over being told we couldn’t go out for a walk at 11pm or for seemingly no reason at all.  I realized how much stronger Naomi had become since her last violent outbreak over a year ago and I realized that I was not able to stop her very easily.  It broke my heart, but there were times that I could not restrain her and I was getting hurt.  I had to make her feel pain in order to disrupt what she was doing long enough to stop her.  I was wondering if MRT was doing far more harm than good.  I went into the clinic that Monday and asked that the intensity be decreased.   “Let’s just try one more day.” The tech said.  “There isn’t that much difference between 52 and 56.”   Since there had never been any hesitation to lower the intensity for much flimsier reasons, I was shocked that the tech essentially blew me off.   Much less intense aggression earlier in the study was a call for significant decrease in the intensity without me requesting it.   I assume the difference was that we were dealing with a different tech.   I wasn’t prepared for his response, so although I made it clear that I was disappointed, I didn’t fight it.   Still, I was annoyed to say the least. 
The next 24 hours were awful.  More of the same.  More aggression, more violence.  None of it made sense.  “I want to intensity decreased and if you don’t do it, we’re quitting the study and going home!!“  I told the tech the next day.   We were seeing a different tech this time and she quickly complied.  She seemed to be a little surprised that the last tech hadn’t even consulted the doctor.    I hoped this would make the difference,  although I feared it would not. 
That afternoon, I took Naomi swimming.  We spent about 2 hours there, had a snack in the lounge and started heading off to Kroger as our evening ritual dictates.  “DRIVE THIS WAY!! SWIMMING!!! SWIMMING!!!!!”  She was freaking out, kicking the seat, screaming crying, trying to open the car door – thank God for safety locks. She was trying to get to me but unable to control her movements well enough to take her seatbelt off.  It was as if she had completely forgotten that we had just been at the pool.  Telling her the pool was closed and we had already gone swimming was not helping. The meltdown lasted for another half hour after we got to the Kroger parking lot.  At the end she said “I’m all done.”
I wrote the doctor an email that night and she responded quickly.  Treatments would be suspended.  We would have an EEG the next day and there was a possibility that we would have to quit the study.  We went ahead with the treatment and the doctor in California assessed it.  When I spoke to him I was in an active waiting room and on a cell phone, so I wasn’t able to follow it 100%, but what I gathered was that there were no alpha waves on the left side of Naomi’s brain.  He said that her reaction was very rare, (the number 1 in 2000 comes to mind, but I’m not sure that is correct.) He said it happens sometimes in adults with a result of depression, but in children it is more likely to make them hyperactive.  We reviewed the need for light exposure in the morning, Naomi’s diet, her recreational activities and in the end he told me they would be altering her MRT treatment. The position, the intensity and the frequency would all be different.  The next day we did the new treatment and I noticed a change.  It was mild, but I called Stephen and told him that we had turned the page and I was relieved.  Then I gave her a medication.  (I write about the med in a later paragraph.)  Everything went crazy again.  The outburst was bad.  It was about an hour and a quarter long.   The next morning, we had more of the same. 
I saw the doctor the next day and we stopped the med.    We went back to getting the new MRT treatment and things got better.  I was grateful, but warn down.  I just wanted this to end and to go home.  I would even say I was mildly disappointed that we weren’t let go from the study.  Another side of me was hopeful that the week of treatments we had left would make staying worthwhile.
With 5 days left Naomi got an intestinal bug.  It started as a fever.  “Owie on your head.  Owie on your tummy.”  I figured it was general malaise.  I didn’t consider the stomach bug.  About 3am I found out it was more than malaise. She was throwing up.  We had no washing machine in our apartment and a lot of cleaning up to do.  Naomi seemed better in the morning, but I phoned the clinic to tell them what was going on.

“We can make up for the time over the week end.  Why don’t you stay home today?” I didn’t want to have to delay the end of this by any time at all.  I wanted to get done and go home.  So we went to the appointment.  After a long wait in the waiting room they told me they would have to take Naomi’s temperature before proceeding and they would have to get one from the other clinic.  So we waited some more.  The whole time I was thinking “I am probably going to get this stomach bug next, I have no one in town to help me and I haven’t got the laundry done!! I’ve got not time to wait. Hurry up! “  Naomi’s temperature was normal and she got the treatment .  Luckily, I didn’t get the bug and Naomi wasn’t sick again. Small mercies.  Naomi was calmer, but it was hard for me to know if it was just part of the lethargy and exhaustion that comes after one has been sick, or if she was emotionally better.  “Owie on my bum!”  She frequently said over the next few days.  I thought this meant that diarrhea was coming, but it never did.  More small mercies.  The ‘owie’ slowly went away.  I was counting the minutes before we could head home. 
On our last day Stephen flew in to town to help us pack and drive home.   I asked him if he noticed any change.  “Not really,” he said, confirming what I thought.  A few hours later he said “I haven’t seen her make an angry face.” 
It was true.  With the illness and counting the minutes to go home I hadn’t noticed, but her tendency to get angry and lose patience over small things had significantly diminished over the past few days.  Unfortunately, there were only 8 days of MRT treatment left when the position and frequency were altered, but I think those 8 days made a difference.    We were happy about this because Naomi’s emotional issues are the most difficult to deal with.  Naomi was less cuddly after the treatment procedure changed too.  At first, I assumed this was because of her illness, but when she got better and the cuddly nature did not return, I reconsidered it.  Maybe it was due to the MRT treatment changes.
Our trip home was uneventful and Naomi adjusted well.   She asked for her doll house upon returning.  She hadn’t played with it in years and I didn’t know where it was.  When I told her I’d look but maybe it was gone, she gave me a very sad and disappointed look.  No anger, no growling, no hitting the wall or yelling “DOLL HOUSE!”  Just a sad look.  This was a definite change.  This wouldn’t have happened before MRT.  (I found the doll house 5 minutes later amidst our numerous boxes of clutter so this story had a happy ending.) 
The next few days were also good.  Stephan and I would often look at each other with a knowing look that said “Wow, she stayed calm though that.” “Hey, she didn’t get angry!”  But this period of peace was short lived.  About 5 days after we got home signs of anger and impatience showed up again.  Every day there was a little more until we were back to where we started before MRT.
Her teachers at school have avoided answering the “Do you notice any difference?” question.  My guess is that they don’t want to disappoint us by saying “No.”  Mainly they have commented that she has gotten back into the routine of school well and her academic performance hasn’t regressed.  Good things, but not the reason for perusing MRT.
Yeast is a very big part of this story and I don’t know where nor how it fits into Naomi’s experience. A urine test was done at the beginning of the study.  I knew she had yeast, but I didn’t know how bad it was.  It was really bad.  Like 10 times the healthy limits bad. We started on Nystatin.  After a couple of weeks, I really didn’t think it was working since she had even more of the thick, frothy saliva that tells me the yeast much more pervasive than it should be.  So I put her on some herbs.  They helped, but not much.  Then we started Diflucan.  Honestly, I still noticed that thick, frothy saliva was increasingly present.   It was around her 2nd week of Diflucan that she started to get very aggressive and I contacted the doctor.  There is still some question as to whether the treatment, the Diflucan or some combination with bad luck thrown in were the cause in this negative behavior change, but I guess we’ll never know.  The treatment for the MRT was changed, we stopped the Diflucan and Naomi was getting better.  That was good enough.  We are still fighting yeast.

So in the end… I don’t know.  I think this is why I’ve put off writing about it.  Obviously, the results were mild, temporary, and not what we had hoped for.  Yet, if by some miracle we are told that we were in the placebo group and therefore entitled to an additional 5 weeks of treatment, I’d be there.   I still have hope for MRT.  Maybe we are just a link in the chain that helps make changes so this becomes more effective. I usually hate the phrase “At least you tried,” but this time that’s what I’m saying.  “At least we tried,” and for whatever reason, I’m glad we did.