Autism Moms Have Stress Similar To Combat Soldiers

In a first, GW researchers find an autism-linked gene is sensitive to hormones.

February 17, 2011

By Danny Freedman

A gene that is suppressed in some people with autism may explain evidence of high testosterone levels, and could shed light on why autism affects males at four times the rate of females, according to a new study by GW researchers.

Some researchers have suggested there may be a link between autism and exposure of a fetus to elevated levels of testosterone, however “there’s been no explanation for why or how fetal testosterone gets elevated,” says lead author Valerie Hu, a professor in GW’s Department of Biochemistry and Molecular Biology.

In the study, published late Wednesday in the online journal PLoS One, Dr. Hu and her colleagues identified a downward spiral that, in some people with autism, leaves the body with a glut of testosterone, the primary male sex hormone.

The affected gene is called RORA (short for retinoic acid-related orphan receptor-alpha), which Dr. Hu’s research previously has shown to be suppressed in brain tissue and lab-grown blood cells from some autistic males and females.

A deficiency in RORA aligns with several processes known to be lacking in autism, such as development of the brain’s cerebellum and the protection of brain cells against physiological stress.

In the current study, the team found that RORA levels are decreased by testosterone, and that creates a self-perpetuating loop: RORA controls an enzyme called aromatase—which the body uses to convert testosterone into estrogen (the primary female sex hormone)—so that enzyme also decreases in the brain when RORA is suppressed. The body then is left with an excess of testosterone that even further stifles RORA.

It’s the first time that a gene tied to autism has been shown to be sensitive to hormones, according to Dr. Hu.

The study “can both explain the higher level of testosterone in at least some individuals with autism, which no one has ever explained before,” she says, “and it gives us some insight into a possible mechanism for the sex bias.”

The researchers found that estrogen has the opposite impact, boosting RORA, and as a result raising the enzyme that converts testosterone to estrogen. If high testosterone is found to be a cause of autism, estrogen may be protecting females from developing the disorder, says Dr. Hu.

“This male/female ratio, heavily slanted towards males, has always been a puzzle,” says Dr. Hu. “No one has been able to explain that. So I think if there is any sort of molecular mechanism that can help point in that direction, it’s really getting at one of the core pieces of the biology of autism.”

Along with Dr. Hu, the other authors of the study were GW Ph.D. and master’s students Tewarit Sarachana and Minyi Xu, respectively, and Ray-Chang Wu, an assistant professor in the Department of Biochemistry and Molecular Biology.

Further research aimed at understanding precisely how RORA is regulated could yield an avenue for treating aspects of autism in some people, says Dr. Hu. “If one of the key problems is that RORA is decreased in autism, how do you increase it? How do you keep it up?”

This therapeutic approach—hunting for and isolating deficiencies on a genetic level—is the overarching work of Dr. Hu’s lab (which was chronicled in the summer issue of GW Magazine).

Her studies have been inching closer to a blood test that could detect not just autism, but specific subtypes of autism. In addition to raising hopes for earlier detection, a genetics-based diagnostic test may also point to better targets for drug treatments.

The work of Dr. Hu is in addition to the efforts of some-two dozen other faculty members at the university who are chasing autism from myriad angles. To that end, Dr. Hu and other researchers last year began laying the groundwork for unifying these efforts within a new autism institute, to be created in partnership with Children’s National Medical Center, in D.C.

“She is all tuckered out” I reply, “She’s spread out all across my bed, sleeping.”

“N’aww” we both say in unison.

“Do you have a bubba?” my sister’s friend interjects, thinking I’m talking about my own child.

“No” I laugh, shaking my head. “She’s my cat.”

I can understand the confusion. The way I talk about my cat Lyra is with the heir of a new parent, and I certainly do go on about my Lyra like one would talk about their own child.

“See that? Lyra is so smart. She understands my words completely” I’ve been known to praise.

I’ve lately been aware that the way I speak to Lyra, in fact all cats and even dogs, is not how I speak to young children or even babies.

Yes, when it comes to the term ‘baby talk’ I don’t even apply it to the intended target. I usually look upon a baby like a work of art; bright eyes, upturned nose, cubby little fingers – yep, it’s all there. Or I might focus or the roundness of the nose, that bit of dribble sticking to the bottom lip. Or sometimes like a physician because autistic symptoms show by 18 months old and when they are in those first few months I wonder ‘will this child be autistic?’ I look for hand flapping and eye wandering.

The way I talk to a cat especially my own is like this: “Hey Lyra, hey baby, how you going?” I admit the ‘baby’ is mimicry from my mother who often called her that. I also give her such ‘pet names’ as Bubbles or Buckles or something in a sweet voice that makes me stop and wonder – just what am I doing?

When I cuddle her I squeeze and hang on for dear life and only let her go if she squirms. When I hug (not even cuddle) a person it’s as if they are made out of sandpaper and my arms are tree branches. It feels awkward and forced and really has no emotion to it. I still love these people, I just don’t hug well. It’s like giving a social nicety: it’s forced, no matter how genuine I am and it’s not my chosen way to convey these feelings.

When it comes to talking with children I notice I don’t simplify words for them. Once two children came over to my house – some children of my mother’s friends – around the ages of 9 and 12 and because I was my mum’s youngest she said I should hang out with them. Well, they talked to me and I smiled like I cared but the whole time I had the overwhelming feeling to talk about astronomy. I put on a documentary because I thought I’d find it interesting and my sister came in and made some remark about it being boring and the two kids laughed, and then I left to go into my room and sulk.

Another time I watched my step brother play with his son while in my mind I tried to construct the best how to draw exercise for him to do because I thought maybe I could teach my four year old nephew how to draw using a geometrical model to get the scale right. His potato faces and tiny beady eyes just weren’t up to par.

And recently while I was aware that the best baby talk I could ever do was to say ‘hi’ in a high pitched voice while feeling immensely awkward, I tried to show one of my niece’s how to work a motorised toy but it’s was faulty so I spent half the night obsessing over fixing it. I basically learned what codec it used and how to hack into it so I didn’t have to pay extra for a play set, while looking up how to activate this mode that wasn’t working on Google on my smartphone.

When speaking to my nieces I don’t put on a ‘baby’ voice as if they are small kittens pleading for the remaining milk in my cereal bowl but like I would any adult, teenager, ten year old, seven year old and new born. My style of talking to each age group is universal and it’s because my social skills were developed throughout my early twenties. I basically only know how to speak to an adult audience - and I struggle to that properly at times.

So, what’s left is how to transfer this speaking style from cute fluffy animals onto the young of people I find confusing to begin with.

“Would you like some Whiskas treats” might be a start but could be misinterpreted as me trying to feed small children cat food, and that won’t go down very well, especially because their parents are vegetarian.

I tell Lyra, “Want your rope?” when I’m trying to get her to play with me. I even talk to her like a child when taking photos of her: “it’s OK, last one I promise. I know it’s loud. I know you hate it.”

How can I transition this over to babies and young children – you know, the ones you’re actually supposed to talk like this to?

When I’m lost at what to say to adults (or people – I don’t see age – I just see people more socially competent than me) I try to find a common interest. Conspiracy theories are what get me engaged into a long conversation but again…little children.  “What’s woswell?”

Really, the only common ground I have with little children is my old special interest in The Lion King, but again I can’t just talk to them in a way they can relate. I usually end up talking to their parents or any adult around who end up ignoring me because my excitement about talking about this long ago obsession can be misinterpreted as arrogance.

“I saw the original movie at the cinema when it was first released.”

“I’ve still got the very first preview of this movie. It’s upstairs, on VHS. Yes *laughs* on VHS.”

“I remember when they brought out the extended edition, thought I was experiencing memory loss.”

“So, who else had a crush on Jonathan Taylor Thomas when this came out?” *looks around expectantly*

I’ve very protective of my cats too especially around young children. When those two kids that came over to my house pet my old cat Ari I told them rather firmly to pat him gently and not on the back because he is very delicate.

After returning from a particularly disappointing night out I witnessed Lyra jumped from a balcony and land beside me. I was panic stricken. I picked her up and ran up to my room and told her while holding onto her dearly: “You’re all I got. Don’t you ever do that to me again. If I lost you I wouldn’t know what to do.” I’d never proclaim something so emotional to a person and somehow I think that's what a aprent would say to a child.

The difference between Lyra and other cats I’ve owned is that we are both attached to each other. We moved to a strange place that is confusing and scary and we have bonded strongly because of it. Lyra has always had canine characteristics; she comes when I call her and craves attention. I don’t know if all Maine Coon’s are as loyal and loving as her but I know she loves me. She jumped off the balcony because she missed me and like a true cat got jealous when I pet another cat.

As much I want to have a relationship with another person like I do my cat I struggle to. Even when I talk to people and find common ground there’s no feeling of connection, that I really am of the same species. People are very social minded and driven by emotions and are less analytical. I can tell by the way they speak and their choice of words and the emotionality of their words – not to mention the five seconds they spend talking on a subject that interests me and then nring up something completely random and unrelated and don't return to said interesting subject. Socialising to me is nothing more than obtaining information and sharing it. While I can enjoy being with someone, after I reflect on it when preparing for the next encounter I’m thinking about what I will say because I really need to share the information and simply hanging out and enjoying each other’s company doesn’t occur to me.

If I lack a connection with adults then what does that say about the way I feel about children? At the end of the day I’ll always have my cats to talk to, to cuddle, stroke and pet and feel comforted by and still be at a loss to know why I feel this way about them (especially my Maine Coon wonder cat) and not the progeny of my own species. Probably because I call them the progeny of my own species.

 The minute after reading over an article about Pathological Demand Avoidance syndrome (PDA), a sub-type of autism, I immediately rejected it as just another useless psychiatric label placed on people with personalities that went against the status quo. Naturally, this is usual reaction of someone with the disorder. Like Oppositional Defiance Disorder and Narcissistic Personality disorder and many other personality disorders the afflicted person will be in complete denial that anything is really wrong.

My defiance was because the article described my childhood; all those issues I had that my diagnoses of autism and ADHD and even selective mutism couldn’t describe.  So, after about a day of self-denial and after reading another long article about PDA – which I only clicked on so I could basically rant about it with the other users on the autistic forum where it was linked – it suddenly hit: this is me.

Pathological Demand Avoidance syndrome (PDA) is characterised as a constant avoidance of following basic orders placed onto the individual by other people because of a high anxiety felt when they are not in control of a situation.

It is usually not as severe as autism or even Asperger’s when it comes to social skills (though I am the exception) which are usually at an average level and the individual uses this to their advantage. Their moods can be very temperamental and their parents or peers will refer to them as having a Jekyll and Hyde type of personality. When confronted or even disagreed with they will become angry or even violent.

 PDA is on a spectrum of mild to severe like autism and Asperger’s syndrome and may be co-morbid with both disorders, or exist in ADHD, dyslexia, dyspraxia, Bipolar, etc.

 The avoidant behaviour in school years can be seen by others as extreme passivity; the child will go completely quiet, not move and do anything so they can avoid doing the task being asked of them.

When I was a child I also had selective mutism, an extreme form of social anxiety, though I didn’t know it at the time. I barely spoke in school and in my early school years other students thought I was deaf. It actually excited them to hear me speak. It was especially frustrating for my teachers who struggled to teach someone who just couldn’t be taught. They were unaware of any processing issues or autistic symptoms or ADHD because I was just silent and appeared to be doing my work when really I wasn’t. Another symptom of PDA is to come up with crafty ways to make people think you are listening to them or doing your work just so they leave you alone.

One PDA moment that sticks out for me is when my year 4 teacher insisted I joined in on doing an exercise involving giving a blindfolded classmate directions. I didn’t say a thing and because my teacher was prone to saying ‘right’ whenever he got frustrated with students who were currently chattering about me, the blindfolded student turned right. I was told to sit down.

Another time my avoidant behaviour turned into comedy. I hated PE because I didn’t have the faintest interest in it and was bad at it due to poor motor skills, so I would muck around by running in slow motion while other children laughed and I got a firm word from my teacher to take the lesson seriously.

In subjects like math and science I was a pro at looking like I was doing my work when really I was drawing. I ended up winning the art award out of the whole school – the lowest achieving student, silent and unmotivated, turns out to be a better artist than the senior year.

 I saw my avoidance as stubbornness. I just didn’t want to do anything asked of me. Back then I didn’t know I would only listen if I agreed in my heart of hearts that it was the right thing to do or that I first needed to know for sure that I could after  given step by step instructions. Most of it was because of a fear of change which I still struggle with now.

At home I was no less avoidant and demanding than I was at school. I spoke a bit more but never in any conversational sense; I probably spoke to answer people and ask for things and that was it. I never tried to manipulate a conversation or people because I didn’t have that ability yet. As a wanderer I would insist that only my mum would come and find me otherwise I wouldn’t come back, although my sister always ended up dragging me back. PDA though I might be, bossy was I not – and my sisters were real pros. But I do love my sisters and my brother and am grateful they tried to keep me in line.

People often did things for me so I didn’t learn how to do things on my own from cooking my own meals, doing house chores to cleaning my own room. I think when I hit adolescence I was made to clean my room though. I don’t blame anyone for doing things for me; I know what I was like back then: extremely avoidant, had a very limited amount of general knowledge and would have typical meltdowns over any change or if I didn’t get my own way.

In my teen years avoidance turned into rebellion. The pressure from my teachers to shape up made me do just the opposite. My friends were the bad kids that got sent out of class, who got into fights with other kids (though they didn’t feel like the bad kids to me). And I always thought that just because they complained about school work that they were as bad as it as me. We were the class clowns; we were just bored. My inability to learn turned into apathy – I didn’t need it, everyone acted like school was so important but if I wanted to leave I could just do it – and then I did and was home schooled which is kind of impossible to do if the student decided that don’t want to do the work anymore.   

Eventually I became a Christian after avoiding reading my Bible as much as possible from the age of 10 to 14. I was actually born into a church but it was never asked of me to get involved. A couple years later after getting into political matters, er Communism, I became defiant again and there was a constant war in my head about dropping Communism to be a better Christian or leaving the church altogether. I described myself as an on/off Christian. When the War in Iraq started I really hated to hear what the Pastor had to say about it. He didn’t know what was really going on. He just hated Saddam or Osama Bin Laden because they were Muslim and therefore not of God. My mum told me that his upbringing was different, i.e middle class and that just made me hate him even more.

When I did leave the church for good it had nothing to do with politics but my father’s passing and my guilt for not allowing myself to know more about Hinduism and not being able to understand him more. It was a very angry and confusing time for me.

Then suddenly I changed. I became more social although I had been slowly building my skills since I was about 14 or 15. It probably did have something to do with the church. I was a helper for a younger Sunday school class and hung around with the entire youth group, though I still remained silent. I thought my social life depended on being there than actually taking part. Then when I had my first and last relationship I realised I wasn’t as social as my boyfriend and his friends and I wanted to be. So, I developed the most profound level of socially anxiety imaginable.

One thing I noticed during that time is that when I decided to do something I went all out until my goal was reached. I committed to lose weight and lost 10kg in two months, the healthy way. I lost a further two or three after that. Then gained it all back with alcohol so after the break up I had to work on losing it again.

Years later after my autism diagnosis I realised I didn’t know as much as people and wanted to so I hit the history books, science and any book that looked interesting. I stopped sitting around in pj’s all day watching TV and made sure I got dressed before midday. I started to clean up after myself and do chores – one reason being that when I forgot to I got yelled at. After my ADHD diagnosis I was put on medication which finally made it possible to read with more understanding and get my head around impossible physics which now sounds about as simple as learning a times table. Information was staying in my head and it made me talk to people more.

Most of this turnaround was in a way PDA. These were things I wanted to do and when I saw people not following suit I got angry at them, confused at why they wouldn’t do it if it made things so much better for me. By getting my social anxiety under control (through reading a book about cognitive behavioural therapy and doing the exercises), by insisting I learn year 12 math and physics, by being more organised, by understanding my symptoms more I was taking control of my life. I would give people pointers about how to better themselves too in a very abrupt and emotionless way and wonder why I was being accused of being hard on them. The solution was so simple to me but other people still were umming and arrring and I couldn’t understand why.

My mind can fall into a very set way of thinking which I do temporarily overcome by opening my mind by looking at a situation from a different point of view (this is how most of my arguments start out ironically) but there are times when the old way of thinking comes back that says the only way to do something is the one that gets answers by ignoring emotions and looks at the most logical way of dealing with a situation. I make fun of myself by adopting a Spock accent and saying ‘Logic dictates that we...’ whenever someone becomes emotionally overcome from an issue they are having. This probably doesn’t provide the worrier with much comfort and just increases their stress.

Since I have increased my social skills and speak freely and have become more impulsive and my increased knowledge and curiosity gives me many ideas and opinions, I have become rather argumentative. Not long ago it became very problematic. I would get into heated and emotional debates about issues that I’d soon forget about. I felt it foolish to get so passionate and upset over these things that I’d soon forget about so I adopted a more rational way of arguing. When I am engaged passionately in one on one conversation and can at times forget that my conversational partner has their own thoughts and feelings and may feel insulted by my constant correction of their grammar or their knowledge of...anything really. My motivation is to teach them the facts because I feel comfortable once someone knows the facts and it doesn’t enter my mind that people take it personally when you challenge their opinions, and don’t take it well when you say “stop being so emotional.”

PDA is often described as avoiding listening to people but it is also about being in control. Even when it appears to be overcome PDA will be with the person for the rest of their life. So, what can be done about it? As someone who knows what it’s like to have PDA as a child where it interferes with education and a healthy relationship with the family and peers I will say persistence. We are sly little devils and will go out of our way to avoid doing a task. Behavioural intervention doesn’t work on us – something I always think about when I see videos of autistic children learning from it – I wouldn’t have done that but remained silent and stubborn until taken home – and not even a routine structure works but a more negotiatitive style may show some progress. The parent and teacher must check that the child is actually doing their work and retaining the information. One thing I have found that seems to help me is to keep me busy. I’m bored and restless when not intellectually or physically stimulated. Smacking will just make the child have feelings against you and work out better methods to make it look like they are listening.

Many times when someone told me my behaviour was wrong I would take it personally and hold it against the person, usually a parent in the church in which I’d mumble my reply of “you’re not my mum, you can’t tell me what to do.”

You must keep in mind that PDA is no fault of the child or their upbringing; it is a neurological disorder common in autism and ADHD. When the person afflicted realises they have it and actually believes they have it they will do their best to correct their behaviour, by themselves. But it still has to be corrected especially if it interferes in education and communication skills and the defiance and avoidance this disorder brings can bring about denial and more behavioural disorders such as Oppositional Defiance Disorder or Conduct disorder. 

Chocolate seeping into a cavity or the pungent odor of a dead skunk - they both send our senses reeling.  But what about the sound of flourescent lights, the feel of socks donned hours ago, or annoying carpet patterns?  Typically, the brain filters out bothersome stimuli. But for autists, the brain may not organize stimuli as well nor filter  out stimuli that would drive most of us crazy. Easy tasks, like wearing a shirt, making eye contact, or writing, can become a violent showdown.

Whether hyposensitive (needing extra stimuli) or hypersensitive (needing less stimuli), autists battle their senses everyday.  The hyposensitive kids can appear rough, clumsy or loud.  The hypersensitive kids prefer low volumes, darker areas, and may dislike clothing. 

While the five senses get bombarded, the other senses, such as the vestibular system, can be more dysfunctional. If you get carsick, you are well aware of your vestibular system.  It detects changes in balance and is closely related to vision. An autist may trip easily or fall out of his chair at school.

Another affected sense, the proprioceptive system, tells our bodies to compensate for changes in our balance and our environment. This system is closely related to fine motor skills and coordination and tells us how far to reach for an object, how hard to squeeze a glass while drinking, and the correct pressure for stroking a pet.  Autists may write too hard; grip, squeeze or twist her toys agressively, or talk too loud. She may be unable to make her fingers use scissors, buttons, zippers, or eating utensils. She may know  how to ride a bike, but can't get her legs to do the work.

Also on the battlefield is the oral sense, which helps us to blow, suck, whistle, speak, chew, eat and drink.

Sensory Integration Activities should be a part of your plan of attack.  They are as varied as autistic children themselves, but here are some tips to take, tweak, or toss:

For head banging, try deep pressure activities on the body or face; crawling over large stuffed animals, jumping/ landing on soft cushions; climbing into small spaces, wrapping up in weighted blankets or vests; rolling on a theraputic ball and getting 'squished' by the ball too! Running, jumping, and rolling downhill strengthen the vestibular senses. Walking while carrying objects can improve balance.

A child who rocks herself may enjoy swinging, jumping, roller coasters, merry-go-rounds; activities inwhich she is in motion.  Hand flappers might enjoy music and drumming objects or shaking small instruments and/or stuffed animals to a beat. You might even try a metronome.

Sensory integrations worthy of your arsenal combine both touch and sound such as: running fingers through containers filled with beads, beans, small plastic shapes, packing peanuts, smooth stones, foam cut outs, sand, or even gravel.  Water provides excellent opportunities for integration. Dunking objects into the kitchen sink provides smooth and wet surfaces; the child can control the sound and splash as items are dropped into the sink. Bathing or swimming is a fabulous full body sensory integration. Your child may also enjoy arts, crafts, constructing, using a mouse, or digging with sticks in the dirt.

Oral senses can be strenthened by blowing pinwheels, bubbles, a pencil across a table, cotton balls, using a straw, imitating facial expressions and mouth noises. There are a number of different types of therapeutical eating supplies.
If your child struggles terribly getting her muscles to do what her mind wants them to, break each activity into baby steps. Your first step might just strengthen the muscles needed for the activity.  For example, building hand and finger strength with play dough long before learning to write, can help ensure success. With time, a big dose of patience and practice, you can help your autist build a peace treaty with her senses! 

Annie Eskeldson writes for families of very young autists and has 2 published children's books:  Ashi's Gift and the sequel Ashi: In a Class all by Myself.  Visit http://www.authorannie.com/  for more details.
Her autist loves gravel, trampolines, swings, water and music; but hates plumbing noises, food and clothes. Ashi could write with a pencil at 6, and at 7, is able to ride her scooter.

Resources:
http://www.incrediblehorizons.com/sensory-integration.htm,  http://www.sensory-processing-disorder.com/proprioceptive-dysfunction.html,http://www.suite101.com/content/proprioceptive-dysfunction-sensory-issues-in-children-with-autism-a331019,  http://autism.lifetips.com/cat/66419/sensory-issues-and-autism/index.html,  http://autism.healingthresholds.com/therapy/sensory-integration,  http://www.beyondplay.com/,  http://www.authorannie.com/
 

As a parent of a child on the autism spectrum there are days we can become so exhausted, so beaten down by the challenges that come along with the awesome responsibility of raising a child with autism that we invariably ask, if even for a moment,”Why me?”

Sure our public face may be one of the eternal optimist as we celebrate our child’s strengths and request that others do the same. The bottom line is that you reach the limit of your ability to give far more freqently and more quickly than other parents.

I’ll be flat out honest with you because that’s why you read what I write. I have days when I silently say, “Dammit, I wish my mind would just work the way I want it to!” That doesn’t mean I want to be someone different. It speaks more to those moments when I loose perspective on what being a parent and being on the spectrum is about.

What Is It All About?

For one thing, it isn’t about simply avoiding meltdowns, arguing with teachers and managing the latest crisis.

It isn’t about resigning yourself to the fact that your child is “different.”

And it sure as hell isn’t about accepting a life that involves feeling burnt out all the time.

If you feel that your life will inevitably no longer be yours because you have a child on the spectrum then it’s time to wake up and smell the helplessness you’ve bought in to. Life is meant to be experienced not endured, survived or suffered through. The person who said, “Life’s a bitch and then you die” clearly did more bitching than learning.

Now I’m by no means a religious person but I do go out of my way to find meaning in my life experiences, no matter how horrible they may seem at the time. I say, at the time, because perception is everything. The choices that have brought you to this moment in your life, and your beliefs about what options life has for you are not written in stone.

This isn’t as good as it gets unless you’ve decided a full life as a parent with a child on the spectrum is beyond you.

I have had nonverbal people on the autism spectrum using a talking board ask me to explain why this happened to them. I’ve had parents ask me when their child will grow out of this. To respond to them with, “I don’t know” is an unacceptable answer to me. I prefer, “Well let’s see if we can figure this out.”

What’s The Meaning Of This?

In Man’s Search for Meaning, Victor Frankl describes how he and other survivors of Nazi Concentration camps endured and in fact thrived by digging deep into themselves to find meaning in their experience. Meaning that would somehow make what they were going through worth it somehow.

It isn’t to say that you should think positive because someday it will have been worth it. Think of finding meaning in this moment as you would if you were committed to growing a tree. A tree doesn’t grow someday it grows right now and each and every moment you attend to it, when you neglect it it suffers. Your life is no different. The more you attend to other things the more they flouish while you flounder.

I have met many a martyr that believes life is about watering someone else’s garden while theirs withers and dies. Believing that starving themselves is the solution to someone else’s hunger. When in reality, growing a strong tree that can bear enough fruit to feed a village is the only real solution to hunger. Reread this paragraph again. If you understand this lesson alone you will understand the very substance of what it means to help others in the exact proportion that you help yourself, and why self-care must precede truly helping others, including your own child.

People like the Dalai Lama or any other leader that seems to have a bottomless well of giving doesn’t acheive that by suffocating their own spirit, they accomplish it by refining their spirit. What the heck does this have to do with being the parent of a child with autism? Everything.

Autism and God’s Will

Though I’m not religious I did spend six years in a Catholic grade school and still have a lot of it running around in my head. Whether you subscribe to the belief in a deity or simply the experience of a divine wisdom governing the universe, what follows will hopefully resonate with you.

I imagined myself having a conversation with God (as I understand her), about being who I am, my children being who they are in a world being what it is and asking what she had/has in mind. I wanted some insight into what I’m supposed to make of all this.

She answered by saying, “I Have The Right To Change My Mind.” She went on to explain that the difference between the Old and New Testament was the best example of this. After eons of being hot tempered with man she decided that it was time for a different approach. So she switched from fire and brimstone to compassion and natural consequences.

From this she taught me that anger over the events of life doesn’t lead to wisdom, careful observation of what I create through my choices does.

How Can You Tell When God Has Changed Her Mind About Your Life?

You and I both know what it’s like when things appear to be going well only to have things seem to change on a dime. So I asked God, What’s up with that?

She began by saying, “One reason is because I’m an artist and the Earth is a big ball of clay spinning on an invisible potters wheel. I’m continually shaping and reshaping it, in big ways and small ways. I’ll change the position of things, add different color glazes, I’ll introduce new species, then take some away when I change my mind.”

“I’ve added Autism for many reasons. It requires people to stop thinking so darn much about themselves and what they have and requires them to help someone else become better. It requires them to move beyond thinking it’s not their problem and learn to work together as a community again. Many of them are slow learners and still want to divide into smaller camps that create the very isolation this opportunity can allow them to avoid.”

“I change things up on you all the time to keep you engaged, paying attention, in the game. I made swamps to be the embodiment of stagnant energy, I need you for more than that.”

What’s Your Life’s Purpose?

Then she let me have it. She explained why all of this autism was placed in my life as well as yours.

She said, “When I brought you into this world I had one thing in mind for you. . .Growth. The more I love you, the more I will make use of you. The fact is, I love all of you. But many of you curse me when I ask more of you while others make use of the opportunities I give them. The ones who seem to have it all, don’t. I’ll ask more of them soon enough.”

“As I said, I’m an artist, and I’m always creating. Part of that involves helping you create your life. How can you create unless you grow? When I change my mind about how I want to use you in my masterpiece called life, I will provide for you an opportunity to help you grow into precisely the person I need you to be.”

“Growth may mean an auto accident to teach you to value your life and awareness instead of taking it for granted. It may require illness to teach you to appreciate how you spend your healthier days. Abuse your healthier days and you’ll have a lot more days with illness. I know what you’re thinking, but what about those children that are born with illnesses, who haven’t had an opportunity to misspend healthier days?”

“Remember that these life circumstances aren’t designed to cause you suffering, I take no pleasure in that. They’re designed to challenge you to rethink your path, the way you see yourself and the direction of your life. It’s only when you loosen your grasp on these things that I can begin to work with you.”

“Giving you a child that asks why repeatedly requires you to understand your own thinking and your own reasons for being. This child is doing you a service not being a defiant nuisance.”

“A child that is extremely sensitive to light and sound is more connected to her experience in the moment than the majority of you. You all could stand to learn from that. But no. You’d rather teach this child to learn to ignore things and tune them out instead of truly experiencing them.”

What’s Next?

“So here’s what I’d like you to take away from our little conversation about finding meaning in the experience of having a child with autism. I like music. I particularly like music in the style of the jazz jam session. You know where a bunch of musicians get together with no idea what they’re going to play. They just start playing to see what happens and before you know it they’re making music together.”

“That is precisely why I invented free will. I created a variety of human beings with their own special gifts that have the potential to create the human community. But instead you’ve turned it into the human race. Chasing after this and that while running away from each other in order to suit yourselves.”

“My solution. To provide you with millions of children you have to work your ass off to connect with so you stop running from each other and start valuing connection again.”

“This is an opportunity for a jam session like no other. Of course the music sours when some of you tell others the notes they’re supposed to play and the kind of musician they’re supposed to be instead of listening and creating music together. Sometimes I call a person home because they’ve made terrible choices and I’ve decided to stop them from making any more because they just won’t listen. Others I call home because I love them so much I can’t stand to see them suffer unnecessarily. Still others I call home sometimes earlier than they expected because they’re doing so well that they’ve earned early graduation and get one of the best jobs in existence. A job working right next to me.”

“The bottom line is that I work in whatever way I choose. You create the life you choose with the opportunities I give you to grow, or you can choose to fight for stagnation, keeping things the same and wonder why you don’t get anywhere. Perhaps giving you a stubborn, inflexible child is exactly what you need to compel you to work hard for the growth you both need. Then you can grow together.”

“There are some of you that think I work by snapping my fingers. That I heal by winking my eye. I act in whatever way I choose. I may choose to heal through someone I’ve decided to grow into a doctor. I may work to clean up a flood by using the sun as well as many of your brothers and sisters to help you out.”

“I may even help you raise your child by demanding that you reach out and create a community that sticks together, supports one another and grows together. You had grown so far apart, I needed to compel you to grow back together.”

“Here’s the opportunity I’ve given you, what do you plan to do with it?”