Home // Posts tagged "Autism"

Autism’s Secret Society

February 24, 2014 2 comments

Four or five years ago, I was talking to the mother of one of my daughter’s classmates. We were talking about things to do with our children and she asked me, “are you on the list?” I had no idea what she was talking about. When I admitted my ignorance to her, she produced a poor-quality flier from her purse. It had a grainy black-and-white photograph of children playing in a gym. Attention All Families With Austim,” it read, “We will be having an event at [REDACTED]* this Sunday from 2-3 p.m. Please call [REDACTED] to RSVP and email Mother Jones** at [REDACTED] to have your name placed on the list for activities of The Group.”

I wondered what this was all about. When I asked her who Mother Jones was, the fellow mother shrugged and said, “I don’t know. She seems to have been around as long as I know. And she has an autistic kid herself, so she just started organizing things for the kids to do.” So, I got myself on the list, and I discovered that around here, the autism community has its own secret society.

Growing tired, as so many of us do, of going out in public and dealing with the general public and the annoying expectations of some people with “normal” children, Mother Jones began organizing huge play dates at various places in the community — sometimes the number of children that show up is in the hundreds. She rents movie theaters and shows sensory-friendly films, indoor and outdoor pools and water parks, playgrounds, dance halls, and just about any place you could think of for recreation and disseminates information to the people on her secret distribution list. It’s all in an environment where you are surrounded by people who “get it.” I’ve met a number of other families through the years at various events, and the parents (usually mothers) of young children tell me how isolated they felt until they found The Group.

Last year, Mother Jones finally organized a 501(c)(3) to cover any out-of-pocket expenses she incurs that she does not recoup through admission fees. She sent her distribution list telling us all about it. The next time I saw her, I asked her how much of her own money she’s laid out over the years, and she wouldn’t tell me. “Why the tremendous secrecy,” I asked? “Wouldn’t it be better if she could reach more people in the community by getting the word out?” “Not really,” she answered. “The events could actually become too large to manage. The word-of-mouth method has kept the numbers manageable over the years. It also allows me to vet each and every person who asks to be added to the listserv to prevent creepers from gaining access to our kids.”

She does vet everyone who is added to her listserv. How did I hear about her and where did my child go to school? How old was he or she and where did we live? Because both my children are on the spectrum, I was added to The Group’s activities for older and younger children. But we can go to whatever suits our family. I am very grateful that Mother Jones has taken this initiative and that she is so nice to our children each time she sees us. It’s a great relief to me to have somewhere to take my children to get out of the house on the weekends that gives us all something fun to do as a family. And I’ve met some really nice families through The Group. I’ve come to learn that not all secrets are bad. In addition to avoiding the “creepers,” as she puts it, the secretive nature of the group gives it a feeling of real security. You know the people you meet there are looking for the same things you are, and are in similar circumstances. And there’s real comfort in that.

As for Mother Jones, she continues to groom The Group and thinks up new and fun things to do. And she does seem to know the right way to get the word out. My children started seeing a local doctor about two years ago who has a practice exclusively devoted to children on the autism spectrum (after spending about six months on a waiting list). He was talking with me about the importance of getting out with the kids and doing fun things with them in a safe environment. After a moment, with a tiny bit of trepidation, he cleared his throat, paused and looked at me and with a sotto voce said, “have you heard about Mother Jones?” He has an autistic son and is a member of The Group himself. I laughed and told him that I had. Then I smiled and said, “I see she trained you well.”

*Any detail about this group has been omitted at the request of its founder. I told her about this post, and she begged me to try and conceal identities and information so that only those who already know about The Group (not its real name) would be able to ascertain about who and what I was speaking. I have honored that request.

**Obviously, a pseudonym. I named her after my favorite community organizer.

The Grater Good

November 5, 2012 1 comment

One of the quirky things about my daughter is that like many other autistic children, she has an affinity for unusual objects and forms attachments to them.[1]   There was a long period recently when her favorite toy was the cheese grater.  Yes, I am referring to the kitchen tool that you use to shred and grate cheese.  She just loved it – she would go to the kitchen drawer at her first opportunity, pull it out and run off with it somewhere.

I would often be making something in the kitchen, only to discover when I looked in the drawer that the cheese grater was missing, and I would have to set about the house in search of Allison and the cheese grater.

I will never know the reasons for her adoration of the cheese grater because she cannot tell us, but if I had to guess, I’d say she liked the uneven surface and the very tactile nature of the implement.  The same nature, of course, that makes it sharp enough to shred cheese and cut small fingers.  So, I sought to curb Allison’s interest in the grater, certain that it was inevitable that she would eventually cut her hand playing with it.

But she never did.  Eventually, her interest in the grater waned, and now when I go to shred cheese for an omelet or grate some hard cheese to sprinkle over pasta, it is safely nestled in the drawer where I expect to find it.  A friend, also a mother, came to visit earlier this summer and when I told her about this quirk of Allison’s, I laughed out loud, because I am so accustomed to her little quirks and I find (most) of them pretty endearing.  My friend, however, looked pensive and worried, both about my daughter’s safety and probably, about my fitness as a parent.   That’s how it is around here, though, and that’s as it must be.  Sometimes people shake their heads and say to my husband or to me “I don’t know how you do it.”  My most recent answer to that question, and it is a truthful one, is that a sense of humor and a load of patience goes a long way.

I am reminded about Allison’s summer love affair with the cheese grater because this morning, I read the blog post of a woman with an autistic son.  The current post discusses her feeling anger towards God because of her child’s autism.  As I read the post, I was forced to wonder why I was no longer angry as often anymore.  What made me stop focusing on “why me?” or more appropriately, “why my children?”

Blaming God for the fact that there are people among us who are sick, or dying, or dealing with disability is much like blaming Henry Ford for every car accident because he invented the automobile.  It is possible to create something without intending every consequence that flows from that act of creation.  Although that is somewhat at odds with the view of numerous religions that God is omnipotent and is in control of each and every event in the life of each individual, that seems to be an overly simplistic explanation of the nature of God.

There is risk in existence – risk that in being in existence, things will not always go smoothly or well.  There’s plenty of proof that is true in this world and I don’t think it is a failure of God’s intervention that makes the world an “imperfect” place. Or perhaps it is the desire to be “perfect” and free of sadness or suffering that is the problem.  Bishop Desmond Tutu said in his book, Made For Goodness:

“We get all worked up because we reckon that we must persuade God to love us.  But God already loves and accepts us.  God has loved us since the time before eternity.  That love is God’s gift to us.”

I think those familiar feelings of anger towards God are rooted in a belief that one must have done something to be unworthy of God’s benevolence or love.  But really, that desire or longing is just the same as a longing to be perfect (or for your child to be), and therefore, perfectly worthy of God’s love.  It’s just measured on a different scale for our children than most other people’s children. People could be angry at God that their child has flunked math again, or has blown his or her college scholarship, just as often as I could be angry that my daughter can’t speak to me.

Therein lies the fallacy that Bishop Tutu identified –

“Unfortunately, somewhere along the line we have been inveigled and misled by the culture of achievement.  We really can’t understand unconditional acceptance.  We think there must be a catch somewhere, so we tie ourselves in knots in the effort to impress God.  We strive and strain to earn what is already ours.”

God must love Allison, then, even with her cheese grater proclivities. And I do also.

 

 

 

[1] http://www.rchsd.org/programsservices/a-z/a-b/autismdiscoveryinstitute/parenteducation/earlysigns/index.htm

Disabled at 35,000 Feet

October 1, 2012 1 comment

Nothing strikes more fear into my heart than flying with my children.  The very thought of it is a disincentive to traveling by air.  At least it is a disincentive to taking vacations to places where we need to fly.  But in my better moments I realize that we can’t avoid it entirely, and our favorite place to travel is a long (multi-day) car ride away.  I rarely, if ever, have that kind of time.   There will always be weddings, funerals, family gatherings and other important things that our children and we cannot and should not miss.  So, we’ve take the approach of trying to just get our children accustomed to flying instead and doing the best we can.

Our son took this photograph during mid-flight

 

We haven’t given up our right, after all, to travel and be together as a family just because one of us can’t speak and is prone to random melt downs, sudden gleeful noises and hand clapping that could bring someone back from the dead and another one of us is an eccentric individual who has interesting social interactions just about everywhere he goes, have we?  And then there’s the kids, of course.  The freedom to travel is a constitutional right. The right of air travel is also specifically codified:  “A citizen of the United States has a public right of transit through the navigable airspace.” 49 U.S.C. § 40103.

 

Some would say even if we have a right, we should not exercise it, because it is just inconsiderate to others.  Out of an abundant sense of inferiority and guilt, we take extraordinary measures to minimize the disruption and inconvenience to our fellow travelers, by doing such things as:

 

  • Only traveling on flights that do not come to close to sleep times or medication administration times [where possible].
  • Paying extra money for seats that are in the bulkhead so our kids can’t kick people and rock in their chair and push back into others, or we sit behind each other to prevent that.
  • We throw ourselves on the mercy of the TSA and bring juice and other “favored” drinks, take them out of our bag and allow them to be X-rayed to avoid thirsty howls at the gate or on board.  Sometimes they get confiscated, sometimes we are subject to a lecture and shakedown, and sometimes we sail.
  • We take our daughter to the bathroom with increased frequency.  Not easily done on an airplane.
  • We pack enough luggage to occupy a team of Sherpas so that the kids have toys, snacks, extra clothes, more extra clothes and plenty of things to do in the air.
  • My husband (or I, but usually he) will carry our almost 65 pound daughter when she is having an airport meltdown to try and keep her calm and to get us to the gate on time.
  • We sit in the middle seat to “guard” our children against the window and prevent limbs from going into the aisle or into neighboring persons.

 

I’d posit that if you are flying on a commercial jet, you get what you get and it’s really not our problem if you can’t deal with it, particularly given everything we do above.  By the way, for those who are lucky enough to sit next to us, we routinely offer to buy people a drink (or two).  [The reaction of our neighbors to the offer of a drink shows us a lot about his or her character and gives us an idea of what our lives are going to be like for the next ___hours.]  Once, my husband tried to talk the pilot into letting our daughter sit in his lap for takeoff.  The pilot refused, telling us he “appreciated what we were dealing with and trying to do,” but he felt safety was more important.  I smiled and said, “I understand, we are just trying to prevent a lot of angry people on the plane.”  His response:  “That’s too bad for them if they don’t like it.  They are going to have just learn to cope and stick it out.”  I think that’s the right answer, and if nothing else, it bought insurance against some surly person yelling about the situation – we could just shrug and say “Sorry, the pilot said you have to sit down and cope.  Only autistic people can carry on aboard this aircraft.”

 

The real aspect of flying that is difficult for us – the one that makes life really hard – is that once the door closes, once we are up in the air at cruising altitude, sandwiched into that flying tin can of humanity, anything can happen, and often does.  We have had some pretty rough times in the airport as well.  Like the time our son refused to go home and went totally limp and fell on the floor of the terminal at Dulles or the time that some noise at BWI had our daughter screaming and holding her ears shut.  We’ve had good experiences and really bad experiences.  On most trips, it is some of both.  On a positive note, because I conceived of this blog post in the air, here’s a shout out to those who have been especially nice and kind:

 

  • The JetBlue flight attendant who gave us extra snacks and drinks and gave them to us early (before takeoff!) and was just all around nice to us.  We wrote a letter to her supervisor complementing her and I will always try and fly JetBlue wherever possible (nope, wasn’t paid to say that).
  • The flight attendant who winked and smiled at our son when he said “Why is this taking forever?” when we were delayed and talked to him about “all the safety features of this Boeing 747-500,” and actually kept him distracted for 20 minutes.
  • The random people who came up to us in the airport and told us that we were “really special people” and said “God bless you.”
  • The lady who sat next to me and my son for a four hour flight and when we touched down, turned to me and said “I’d like to say you prepared me well, but candidly, he was better behaved than most adults I have flown with.”
  • The man who laughed when we offered him a drink and who bought us one instead.
  • The lady who told a flight attendant about the passenger in front of us who turned around and called me a “moron” when our son kicked his chair twice.
  • All the people through the years who have offered our kids cookies or snacks on board and told us that we were a really nice family.

 

I have two ideas to make flying a little less stressful and better for families with disabilities or special needs. My family has told me both of these are losers in terms of profitability, so I guess they will never happen.  The first is a charter airline that only flies disabled passengers.  I could just imagine what “Autism Air” might be like.  As it turns out, there is a “light” version of this concept that offers charter flights for autistic children, but only for medical travel.

Autism Escapes.

Another idea is a lounge at every airport to which you could have access for a nominal fee that would allow you to have family rooms in which to relax before your flight that are sound-proofed and a “sensory” area and adaptive games that would be appealing to children with disabilities of different types.  Closed-captioned movies would be available on projection TV’s.

 

Maybe it would not be profitable, but given the number of autistic people in the world, it would be valuable.  I now have a “travel” tab on this Blog devoted to discussing your good and bad experiences with special needs travel (not just Autism) of all kinds.

 

Oh and by the way, next summer, we are taking an RV.

One of Our Autism Students

June 14, 2012 Reply

I write this post to celebrate the retirement of my daughter’s elementary school principal. We are celebrating a long career that really went on for way too long, and should have ended some years ago, perhaps before it even began.

Why the effusive expression of adoration, you might wonder? Let me start with my best and favorite example. About a year ago, the following letter came home from school in Allison’s backpack.

Dear Families:

Today, one of our autism students pulled the fire alarm at our school. We had a needless evacuation of all of the students and staff, and the local fire department and police department responded. Fortunately, the disruption was brief.

We’re asking all of you as parents, to sit down and talk to your children about the consequences of a false alarm so that they understand the seriousness and importance of this.

We thank you for your continued cooperation in helping us make our school a safe environment for all of our students.

Sincerely,

Principal Doofus

The utter cluelessness of this letter exists on so many levels. The best part is the openly discriminatory attitude it takes toward “the autism students.” Can you imagine if he had said, “today, one our [Black, Hispanic, Jewish, Asian] students pulled the fire alarm . . . ,” or called out some other immutable characteristic as though it were germane to the discussion? I guess it might have been relevant if he had pointed out that this “autism” student was non-verbal (nope, not my daughter, but good guess) and therefore could not appreciate his act, but that this was a good opportunity to remind people about the importance of safety. Not to mention that as in loco parentis, it is the school’s fault that this child was not supervised properly and pulled a fire alarm.

But no, that’s not what his intent was in writing this note. His intent was to call out the “autism” students because they were the “others,” the interlopers the County forced into his school with their high-minded ideas about education for all and such.

This attitude pervaded Allison’s time at the school. A time that is fortunately, coming to an end. While I really thought Allison’s teachers were very kind, hard-working and tried very hard to help Allison, I really think the leader sets the tone, and Principal Doofus made it clear that were not welcome there.

Remember when James Jay Lee took hostages at the Discovery Communications building? That was back-to-school night, and Allison’s school is right near that building, so all of the back-to-school events were cancelled. When Principal Doofus rescheduled them, he “forgot” to include the autism program parents on the invitation, so we had no back-to-school night. When people pointed out the mistake, we received no apology, and no rescheduling so we could meet and talk to our children’s teachers.

This year, Principal Doofus’ staff “forgot” to include the names and contact information for all of the autism program’s families in the school directory. Did they re-print new directories when they realized the mistake? No, they did not. They simply sent the children home with a note, mentioning we weren’t in there and suggesting that if anyone would want to contact us (don’t know why you would), you get our contact information directly.

Another memorable event occurred the morning that Neil went to drop Allison and me off at the front door because we had an IEP meeting for her there, and that violated some rule for pulling up the semi-circular driveway that existed for a thirty-minute window. Neil had not noticed the sign. Principal Doofus was on the case, immediately screaming at us, as we pulled up. It was ridiculous. I got out of the car with Allison and he continued screaming at me – DON’T YOU SEE THE SIGN!! CAN’T YOU READ!! YOU CAN’T BE HERE.

I stopped dead in my tracks. Parents and children on their way in to the building were staring at us. The unwanted “autism student” and her family, breaking the rules because we were too stupid to understand how it NEEDS TO BE, were just exemplifying all the reasons why we should not be allowed to disrupt this wonderful school community. I had nothing else to lose, so I lost my temper with Principal Doofus – SIR, YOU NEED TO CALM DOWN AND GET OVER YOURSELF! TAKE AN ‘EFFING ‘LUDE! WHAT? THAT’S RIGHT, YOU HEARD ME, TAKE A *&%*(#* LUDE!!!

I walked right past him into the school. He charged in behind me to the front office, looking to continue the argument. Bad idea. That kind of behavior is not something someone in my situation easily forgives, or looks past.

So, thank you for your retirement, Principal Doofus. It could not have come a minute too soon you curmudgeonly, old, bigoted hag. Now take an ‘effin ‘lude, would you?

NB: The principal’s page on the website says it all.

Rosemary Hills ES – Principal.

A Diagnosis By Any Other Name

May 26, 2012 Reply

The autism community is focused on an issue of great importance right now — the definition of autism in the to-be-published 5th edition of the Diagnostic and Statistical Manual for Mental Disorders (DSM-5). For those who aren’t familiar with the DSM, it is the “Bible” of mental health professionals everywhere for diagnosis of “psychiatric” disorders.

There are proposed changes to the definition of autism in the DSM-V that are currently under review and open to public comment. The changes seem pretty dramatic on their face — Asperger’s Syndrome will be deleted and subsumed under the umbrella of “Austism Spectrum Disorder” (“ASD”) Under this same umbrella will be what is now known as HFA, or high-functioning autism, and Pervasive Developmental Disorder (“PDD”). What will be moved out of the DSM-V entirely are genetic disorders with a known cause that sometimes have autistic features, such as Rett Syndrome, Fragile X, and Tuberous Sclerosis.

There have been thousands of comments received already, and the comment period is open until June. People without much reason to know this information (we call them Neurotypicals or NT’s for short) wonder why this is so important. Of course, if you ask different people you will get different answers, but my best effort at summarizing it is that many people diagnosed with Asperger’s will not meet the new criteria for ASD and will fall into a new diagnostic category, or fall out of having a diagnosis altogether. This problem, referred to as “same child, different diagnosis,” threatens to create confusion on the entitlements to specific therapies and educational services people receive.

Theoretically, it should not matter. People receive specific educational services because the law requires that each person with a disability has an individualized education plan and the specific education that they receive is tied to what works for them and is not anchored solely by a diagnostic label. Those of us who have children with IEPs know, however, that theory is not practice.

One asserted reason for the definitional shift is that many individuals with Asperger’s take issue with the terminology surrounding autism as a “disease” that needs to be “combatted.” That criticism is well-taken. I think I heard it said best by John E. Robison at one of his lectures. He said that he had issues in trying to pass the Combatting Autism Act because he didn’t feel autism was something like cancer, that had no real value to the person who had the cancer. He valued his autism and thought it brought him many opportunities he would not have otherwise had. The solution, he said is to mitigate the the disabilities that autism may cause. In some people, unfortunately, autism causes a lot of disability.

I’d like to advance the radical notion that it is time to remove autism (in its many forms) from the DSM entirely. Although it can have many behavioral manifestations from avoidance of eye-gazing to outright aggression, it is primarily a neurological condition and not a psychiatric one. I am continually amazed that Alzheimer’s disease is also still in the DSM. A psychiatric disease, like depression, may interfere with your desire to get dressed in the morning, but autism may interfere with your ability to do so.

It is not my intention in taking this position to enforce the unfortunate social stigmas surrounding many of the traditional diagnoses in the DSM. The reasons I believe autism has no place in the DSM are: (1) unlike classic psychiatric conditions, there is no place for talk therapy in treating some of the core disabilities of autism; and (2) removal of autism from the DSM will focus us on the underlying cause of the condition and bring greater scientific rigor to the process. What is the basis for removing all of the other “autism-like” conditions from the DSM, like Rett’s, that have a known genetic cause, but not removing autism itself? Aren’t all of the other cases of autism just undiagnosed genetic/environmentally caused, but by a mechanism or mechanisms we don’t understand? Why is autism primarily an educational problem and not a medical problem?

This difference, although seemingly subtle, could cause a shift in thinking for the better. Particularly in the way that autism is perceived by the public. We’re all familiar with the ignorant rants of people like Michael Savage. But there is much more benign and harmful ignorance, if you will, that is just as detrimental to the understanding of autism.

I could provide many examples, as could anyone who has autism or loves someone with autism, but I will recount one that is particularly painful. Some time ago, when my daughter was being diagnosed with autism, I went through a period where I was particularly devastated — I had multiplied the number of special needs children I had by two. At the same time all of this was happening, I was also up for a promotion at work. Great timing, I know. In any event, in the law firm world, promotions are generally handled by committees and a memorandum is written supporting that person’s candidacy. I was particularly busy and didn’t have time to arm myself with information, but that memorandum is generally reviewed by (if not drafted by, with editorial approval of the authors) the candidate himself or herself. My superior lied to me and told me it was not — he was going to write it and I could not see it.

Although that wasn’t really in keeping with what I heard previously, I had other things to attend to that were more pressing, so I kept moving. Later, after I learned I was passed over for the promotion, I was talking with a colleague who told me the truth — so I went straight to our management and asked to see the memorandum. They gave it to me, of course, and could not understand why my superior had not let me see it. I figured it out pretty quickly. In the first several paragraphs that contained my basic biographical information, was the following sentence:

She also makes more sacrifices than others do to be here and do a good job every day. She has two young children, both with the same emotional disorder.

Hmmm. I guess he knew that if he wanted to put that information in there, I would want to remove it. Well, he was right about that. Of course, I felt betrayed by the revelation of such personal information without my permission. I could have looked past that, however, if he had bothered to inform himself that my children do not have an emotional disorder. My daughter does not dress herself not because she does not want to, she does not because she can’t. My son has language processing problems that make expressing complex ideas difficult and frustrating for him. The hubris of a person who believes that they have any idea what my kids — or any children with autism, for that matter — go through every day in this world without spending time with them is fundamentally a narcissist. But to some extent, he held the incorrect perceptions he did because the methodology for diagnosing autism is set out in the same place (and is supposed to be performed by the same professionals) as anorexia or borderline personality disorder.

Again, none of this is intended to suggest that any psychiatric disorder is any less “real” than autism. Psychiatric disorders are very real, and so is cancer, but no one would advocate that you put the criteria for staging tumors in the DSM. We owe the people who are coming into this world in the thousands with autism the opportunity to be something other than the 1950s stereotype of the cold, anti-social, distant child.

This candid snapshot was taken over the winter holiday by my husband of my children at a restaurant while we waited for our dinner to arrive. Do these people look like they want to be in this world alone to you?