Saturday, June 21, 2014

Let's Save The NIH Some Money

The latest headline on autism Studies "Parents of Autistic Children Less Likely to Have More Kids." #1 That's a bit of a no brainer and #2 Who Cares?  What good does it do anyone to know that? How many autism families out there have looked at a headline and said "No Sh*t Sherlock?"  What bothers me most about these worthless studies is that some entity (often the National Institutes of Health) is paying for them, leaving fewer precious funds for research that could actually help autistic people and their families.
So here is what I propose:  How about autistic people and their families write the NIH and let them know what does not need to be studied?  Make it clear what is already accepted as common knowledge and what is worthless to us. Maybe we can help them spend their money more usefully. Here is my list of topics in the Things We Already Know and/or Find a Waste of Research Dollars.

Autistic Kids Have Poorer Sleep Quality Than Their Peers Into Teens

Children with autism get frustrated more easily than their peers

Autistic adults less likely to live independently

Autistic kids, on average, have fewer friends than their peers

Parents of autistic children are more concerned about what will happen to their children when they die

Autistic children get invited to fewer birthday parties and social events

Parents of autistic children spend more time supervising their children than parents of typically developing children

Parents of autistic children have more difficulty finding childcare help that meet their children’s needs

Autistic children Have more communication difficulties

Autistic children more likely to be enrolled in special ed.

Parents of autistic children less likely to get a review of what happened over the school day from their children

Autism linked to ADD and ADHD

Children with autism More likely to have sensory processing disorder

1 out of 3 Parents of children have fantasized about physically or emotionally harming a member of the IEP team

Parents  of children with autism report losing friends for reasons related to their child’s diagnosis.

Parents of children with autism more likely to be spoken down to by healthcare and education professionals

Autism Linked to Anxiety

Autism Linked to OCD

Autism Linked to increased incidence of seizures

Families of children with autism spend more money on traditional therapies

Families of children with autism more likely to spend money on alternative therapies

Parents of children with autism have more knowledge on the topic that the majority of people with Master’s Degrees in the same discipline

Parents of children with autism have more struggles with Insurance Companies.

1 in 3 parents of children with autism report being blown off when they first expressed concern over their child’s development

Parents of children with autism spend more time fighting the education and healthcare services for their children

Regression can occur multiple times over the course of development in a child with autism

Parents report anger and frustration over frivolous autism study topics

Parents of children with autism have higher levels of stress hormones.

Autistic people more likely to engage in self-stimulatory Behavior.

Monday, June 16, 2014

How to Maintain a Friendship with an Autism Mom

“You’ll lose, friends” another autism mom told me soon after my daughter’s diagnosis.   She was right.  One of the biggest casualties when autism becomes part of family life is friendships.  Every autism mom I know has lost at least one friendship related to her son/daughter’s condition.  A lot of these friendship are not lost with animosity.   It’s just that friendships are based on commonalities and when the central focus of your life changes, so do the people around you.  Still, I like to believe that there are things everyone can do to maintain these friendships and we’d all be better off for it.
It’s hard to maintain a friendship with an autism mom for the same reason it’s hard to write this piece.  Every autism mom is different so it’s hard to know what to say.  While one mom may be pleased and flattered to hear you say that God chose her to take care of such a special child, another mom may find such a statement annoying.  I belong to the latter group.  So I’ve tried to outline a few things that I believe the majority of autism mom’s may find helpful in maintaining a friendship.
#1.  Listen – This is not as easy as it sounds but it is by far the most important thing you can do for a friend.  For reasons that I don’t completely understand, many friends and family members are uncomfortable with the topic of autism and would rather pretend it’s not there.  They quickly change the topic and the message is clear “I’m not interested.”  Maybe it’s awkward because people don’t know what to say, but the truth is you don’t have to say very much.   You don’t have to know much about autism.  You don’t have to offer advice.  And quite honestly, we probably aren’t interested in the brother-in-law’s sister’s nephew who has autism.  Just listen.  We love that!  Hopefully your friend will understand that you don’t want to listen to autism anecdotes all the time.  It’s up to both parties to make sure there is a good balance in their conversations. But please remember: We want to talk about it.  Please give us that chance.
#2 Keep the advice practical.  You don’t need to give advice, but if you do “You should get out more.”  Is not advice that any autism mom is going to find useful.  Difficulty finding specially trained babysitters and the money they require are huge issues.   If you don’t have solutions for those problems telling autism parents “You should get out more,” is just going to make them feel worse.  If you know of a church that does a ‘special needs date night’ that is helpful.  If you know of a recreation program for special needs kids, that’s helpful.  If you know of someone who can help, give us that number.  You could also volunteer yourself, but don’t volunteer if you don’t intend to follow through.   Blowing off the offer when you are later asked about it leaves us feeling abandoned.
#3.  Know that raising a child with autism is different from raising a typical kid.  Sometimes you will look at us and think “Why doesn’t she just  do X?”  The truth is we’ve probably tried, and X doesn’t work.  We have to approach things differently sometimes.  From your perspective it may not makes sense.  Just know that it’s very different when you live it and try not to judge.
#4 Know when to keep your opinion to yourself.   If you don’t believe in state health insurance mandates and your friend is fighting to get autism coverage in the state, keep that to yourself.  If you’re against voucher programs and your friend is pushing to get special needs scholarships in place, keep that to yourself.  You think that integrating special needs kids takes precious classroom time and teacher attention away from your kids, don’t complain to a special needs mom about it.   If you want to keep your friendship, stay quiet.  What may be ideological to you will sound like “I don’t give a rat’s ass about your kid’s education/well-being” to the mother of a child with autism.   Maybe if you stay quiet and follow #1 your perspective will change.
#5 Don’t interrupt everything we have to say about our kids by telling us about the autistic person that you know of.  So often I find I learn way too much about a brother-in-law’s sister’s nephew. Where he goes to school, what Bibile study he attends, how many siblings he has, what his favorite recreational activities are, how many times he’s moved and what food allergies he has.  The person telling me this usually shows no interest in knowing more about my kid but she expects me to have an intense interest in this autistic person that I am unlikely to ever meet.   You wouldn’t like it if we always interrupted what you had to say about your kids with stories of neuro-typical kids that we know of.   Show us the same respect.   This includes the stories about the successful person with autism that you saw on TV.  Yes, these stories are inspiring.  But we’ve probably already heard of them and they are probably nothing like our kids in spite of the autism label.
#5 Talk about something other than kids and family life.  We are often so entrenched in our family lives that we’d love a conversation that provides a mental holiday.  This is a time that you can have philosophical disagreements and still feel like we had an interesting conversation with a good friend.
#6  Give your friend options. Understand that it may be more difficult for an autism mom to find a way to get out with you, but don’t stop asking her.  Offer a rain check or alternative dates.   When it comes to family events most of us know when the circumstances will be inappropriate for our children, but we still appreciate the invitation.  Give us the opportunity and allow us to bow out gracefully.
In spite of all this, the friendship may fall apart.  It takes two to tango and autism moms have to hold up their end of the friendship if it’s going to work.  Sometimes they don’t.  Sometimes a friendship has run its course and people move in different directions.  That’s okay. But sometimes a little understanding and a few simple rules will help keep the friendship going and a good friend is something that most autism moms really treasure.

Tuesday, June 10, 2014

The Playground

“Naomi, no touching.” 

“Naomi, get to the back of the line.”

“Naomi, don’t smell her.”

“Naomi, be gentle.”

“Naomi, that’s not yours. Put it back.”

This is what I sound like at the playground.  Ever jealous of the moms that get to bring a book or connect with their adult friends during playground time, I am consistently shadowing Naomi  and nagging at her. “No, stop it, don’t do that, wait your turn,” are the phrases that are endlessly coming out of my mouth.  I hate it.  Naomi hates it.  But I haven’t figured out an acceptable alternative. 

I could just let her go ahead and touch, smell and pick up anything that looks interesting, but that is sure to spell trouble.  Kids end up saying something mean and/or sniggering to one another.  If other moms and dads are around even they can get preachy. I’ve also seen her get pushed and hit.  I try to give her as much space as I can, but I also make sure to ward off the conflict and I correct her behavior when I see fit.  I’m trying to send the signal to everyone else there.  ‘Yes, I know what is going on; I’m handling this. You just carry on.’

Unfortunately, having her mom following her around and correct her makes Naomi a bit of a target on the playground.  When they hear me constantly saying “Naomi, Naomi, Naomi,” they decide that she is a kid that needs to be bossed around and willingly join in.   

“Naomi, stop following me!”

“Naomi, move!”

“Naomi, don’t do that.”

Sometimes, they seem to think I’m their ally and I they bring their complaints to me. I tend to disappoint them.

“She won’t give that to me.”  - Well dear, it’s hers and she doesn’t have to give it to you.

“She’s following me!”  -  It’s a public place and she can go wherever she likes.

“Can you get her to stop doing that?”  No, I can’t and even if I could, I wouldn’t.

Inevitably, the questions come.  “Why is she doing that?” / “What’s wrong with her?” / “Why doesn’t she talk?” I wish I had a good answer.  I wish I had a 30 second definition for autism that a 6 year old could understand.  I wish I knew away to help them take it in so their reaction toward her were kind and helpful.  Of course, there’s also a deep dark part of me that would find tremendous satisfaction in answering with “None of your f%cking business!” But I know that is wrong.

So, park visits are tough.  They get Naomi the outside recreation that she needs and I want her to have. They have also resulted in her having great proficiency at monkey bars.  Unfortunately, the playground hasn’t given her a lot of social success. The playground is one of the most intense reminders that the children’s social world really is a jungle.

Tuesday, June 3, 2014

My Love Hate Relationship with the Neuro-diversity Movement

The neuro-diversity movement (NDM) probably wouldn’t refer to me as one of their friends.  Nevertheless, there are several things that I appreciate and respect about them.  I often read their blogs. The posts I get the most out of are written by people with autism that describe their sensory experiences.   Many of us wish we could just get into our children’s heads and experience what it feels like to be them, but that isn’t an option.   Reading the experiences of other people with autism offers some insight.  Everyone is different, so I can never be sure, but often there is an explanation that really rings true and helps me understand Naomi better.  I also appreciate the posts that describe how to work with people with autism in a way that is most effective and respectful.  I try to apply what I learn from those too.  It is far more helpful than people telling me that Naomi is being belligerent, manipulative or “just like that.”  I think a number of the therapies we use have been modified as a result of advocacy for greater sensitivity and dignity when it comes to working with autistic people.  I appreciate that!

On the whole, I think the NDM deserves a lot of credit for increasing autism acceptance in our society.  “Acceptance,” can be defined differently depending on who you ask, but for me, it means being open, welcoming  and accommodating to children and adults in all areas of our community – Our schools, our recreational facilities, our stores, our churches and our neighborhoods, to name a few.   It also means that when we make policy or laws, we make them with people with autism in mind.   We have got a long way to go with acceptance, but we have also come a long way and I think the work of the NDM continues to have a large impact.

The trouble I have with the NDM is the vilification of anyone who expresses a wish for a cure or prevention of autism. I’ve heard this phrase over and over. “You can’t love your child and not love his/her autism.”  Actually, you can.  I don’t just say this with regard to myself but with regard to thousands of parents that intensely love their children, and would do just about anything to find a cure for autism.  They watch helplessly as their children find their bodies cause them to behave in ways they can’t control.   They are told that they shouldn’t want a cure for their children.   They should love them just as they are, as if they don’t love them already. 

Autistic adults that want a cure, (yes there are some), are told that they hate themselves or that they have been brainwashed by a society that does not value them.  They are most certainly not welcome participants in the NDM and I've seen this extend into character attacks that the NMD would not tolerate if these attacks were aimed at one of their own. The ironic thing is that a movement that believes in nuerodiversity does not allow for a diversity of opinion.  You either agree with us, or you are anti-diversity. Hmmm.

The NDM tends to see autism not as a serious biological disorder, but only problematic due to the discrimination and prejudice which holds people with autism back.  While acceptance and accommodation are helpful, there are many people for whom that is not enough to lead a fulfilling life.  Autism profoundly affects the sensory and nervous systems which cause a whole host of symptoms including meltdowns and self-injurious behavior.  This can cause people with autism to act out in ways that is not a true reflection of who they are.  Even when they get lots of acceptance and lots of therapy, many are left unable to communicate effectively, form relationships, self- advocate or live independently. For them, this is not a civil rights issue. This is a medical issue.

On the bio-medical topic, you would swear, from reading neuro-diversity blogs, people that want to take a bio-medical approach to autism are STAMPEDEING toward chelation, bleach enemas and fetal transfers.  These treatments are extremely rare and  almost never used without the guidance of a trained medical doctor.  Bio-medical treatments are mainly just about diet and vitamins.  Most parents who look for these treatments are not hell-bent on completely eradicating autism.  They just want their children to be healthy so autism is not a barrier to making their way in life.

The NDM tends to be really hard on parents.   A parent that publicly admits to being crushed after his/her child has been diagnosed with autism, or jealous of families with neurotypical children,  is viciously attacked and told he/she is a bad parent.  It seems that there are parents that are afraid to say that autism has had a negative impact on the family, for fear of being accused of not loving their child.  They end up saying things like “It’s not the autism.  It’s the sleep deprivation, the anxiety and the meltdowns.”  Well , those things go hand in hand with autism.  It’s good to know they are not bothered by stimming, lack of eye contact and language delays, but that’s not all there is to it!

When an autistic person displays violent or aggressive behavior, it seems that people from the NDM respond by saying that someone in the environment –usually the parents- must have been doing something wrong.  In every other context in the world this is called ‘blaming the victim,’ or ‘justifying violence’.  Parents that have been injured by their children are berated for discussing it openly.  They are told doing so disrespects the dignity of the person with autism.  No other options?  Suck it up.  It’s your fault for failing to control the triggers.  The fact that, in many cases, triggers can be extraordinarily difficult to figure out and even more difficult to constantly control seems to be irrelevant.  There is almost never an expression of concern for a parent who was admitted to the emergency room or lives in fear for their safety.   Just take the blows, take the blame and don’t you dare say anything negative about autism!  I don’t mean to indicate that parents should not learn to effectively and respectfully work with their kids nor should the autistic person be shamed in such a circumstance. Often the violent behavior is self-inflicted and I can’t imagine how anguishing that can be.  At the same time, it is reasonable to acknowledge that a condition that makes a person act out this way is something much more serious than simply a different way of being.

When asked about seizures, anxiety, mood swings and OCD the NDM point out that nuerotypical people have these conditions too.   This is true, but they are exponentially more common and unquestionably linked to autism.  It’s like diabetes link to kidney problems, neuropathy and impaired vision.  People without diabetes have these health conditions too, but if you don’t have diabetes, you’ve got a much better chance of avoiding them.  

Sometimes the NDM  acknowledges that people with autism need therapy or need to be taught things that come easily to neurotypical people. In my experience, however,  they do not acknowledge that often therapy is ineffective, or parents have spent countless amounts of time, money and energy trying to teach a skill that is not being learned.   The only answer is that the parent hasn’t done enough, had the wrong attitude or chosen the wrong treatment.  I believe that we, as parents have to keep working and never give up, but  can’t we acknowledge that  a neurological condition that prevents people from acquiring basic skills is not as natural a variation as hair color or shoe size?  I want to point out here that both Temple Grandin and John Elder Robison have acknowledged that severely autistic traits are cause for serious concern.  I appreciate that!

Finally, the advice for parents to help their children with autism, can be taken to the extreme.  Here is one example.  “You DO NOT EVER restrain an autistic person who is having a meltdown, ever! “  Never?  I have seen an autistic child run toward a baby in the middle of a meltdown.  Was the mother just  supposed to stand back and let him work it out while hoping that the baby’s brain doesn’t hemorrhage?  I know a woman who had her hair ripped out in the middle of her child’s meltdown.  Was she supposed to figure that she could always wear a wig and wait for her hair to grow back?  I can understand that if at all possible, restraining an autistic person in the middle of a meltdown should be avoided, but never ever?

Here is another example from a blog post on stimming.

“Let me be extremely fucking clear: if you grab my hands, if you grab the hands of a developmentally disabled person, if you teach quiet hands, if you work on eliminating “autistic symptoms” and “self-stimulatory behaviors,” if you take away our voice, if you…”

Now, I appreciate the idea that basic, harmless, stimming behaviors shouldn’t be suppressed, but there are appropriate and inappropriate stims.  My daughter likes to stim on zippers.  I have bought her many zipper style bracelets and even encourage her to stim on them, but sometimes she stims on other peoples pants, including men that are complete strangers.  Damn right I grab her hands!  If I am a bad mother for grabbing her hands, then what kind of mother would I be if I let her stim on some man’s fly?  The overall principle expressed by the NDM is not wrong.  Let just not take it to extremes!

There.  Now I’ve pissed of the anti-vaccine movement and I’ve pissed off the neuro-diversity movement.  Of course, I’ve outlined the things that I admire about them too, but let’s face it.  That’s not what anyone’s going to focus on.   I guess that’s why this blog is anonymous.