The Frustration of Autism

What are Autism Spectrum Disorders?

Autism Spectrum Disorders (ASD), also known as Pervasive Developmental Disorders (PDDs), cause severe and pervasive impairment in thinking, feeling, language, and the ability to relate to others. These disorders are usually first diagnosed in early childhood and range from a severe form, called autistic disorder, through pervasive development disorder not otherwise specified, to a much milder form, Asperger syndrome. They also include two rare disorders, Rett syndrome and childhood disintegrative disorder.

Signs & Symptoms

Parents are usually the first to notice unusual behaviors in their child. In some cases, the baby seemed “different” from birth, unresponsive to people or focusing intently on one item for long periods of time. The first signs of an autism spectrum disorder can also appear in children who had been developing normally. When an affectionate, babbling toddler suddenly becomes silent, withdrawn, self-abusive, or indifferent to social overtures, something is wrong.

Possible Indicators of Autism Spectrum Disorders

  • Does not babble, point, or make meaningful gestures by 1 year of age
  • Does not speak one word by 16 months
  • Does not combine two words by 2 years
  • Does not respond to name
  • Loses language or social skills

Some Other Indicators

  • Poor eye contact
  • Doesn’t seem to know how to play with toys
  • Excessively lines up toys or other objects
  • Is attached to one particular toy or object
  • Doesn’t smile
  • At times seems to be hearing impaired

Social Symptoms

From the start, typically developing infants are social beings. Early in life, they gaze at people, turn toward voices, grasp a finger, and even smile.

In contrast, most children with ASD seem to have tremendous difficulty learning to engage in the give-and-take of everyday human interaction. Even in the first few months of life, many do not interact and they avoid eye contact. They seem indifferent to other people, and often seem to prefer being alone. They may resist attention or passively accept hugs and cuddling. Later, they seldom seek comfort or respond to parents’ displays of anger or affection in a typical way. Research has suggested that although children with ASD are attached to their parents, their expression of this attachment is unusual and difficult to “read.” To parents, it may seem as if their child is not attached at all. Parents who looked forward to the joys of cuddling, teaching, and playing with their child may feel crushed by this lack of the expected and typical attachment behavior.

Children with ASD also are slower in learning to interpret what others are thinking and feeling. Subtle social cues—whether a smile, a wink, or a grimace—may have little meaning. To a child who misses these cues, “Come here” always means the same thing, whether the speaker is smiling and extending her arms for a hug or frowning and planting her fists on her hips. Without the ability to interpret gestures and facial expressions, the social world may seem bewildering. To compound the problem, people with ASD have difficulty seeing things from another person’s perspective. Most 5-year-olds understand that other people have different information, feelings, and goals than they have. A person with ASD may lack such understanding. This inability leaves them unable to predict or understand other people’s actions.

Although not universal, it is common for people with ASD also to have difficulty regulating their emotions. This can take the form of “immature” behavior such as crying in class or verbal outbursts that seem inappropriate to those around them. The individual with ASD might also be disruptive and physically aggressive at times, making social relationships still more difficult. They have a tendency to “lose control,” particularly when they’re in a strange or overwhelming environment, or when angry and frustrated. They may at times break things, attack others, or hurt themselves. In their frustration, some bang their heads, pull their hair, or bite their arms.

Treatment

There is no single best treatment package for all children with ASD. Decisions about the best treatment, or combination of treatments, should be made by the parents with the assistance of a trusted expert diagnostic team.

Transcript of and interview with Dr. Bearman on Autism

Dr. Peter Bearman is the professor of Sociology at the College of Arts and Sciences at Columbia University. He also serves as co- director of the Robert Wood Johnson Foundation Health and Society Scholars program at Columbia. Recently, Dr. Bearman came to the National Institute of Mental Health to talk about the focus of his work, autism prevalence. NIMH’s Director, Dr. Thomas Insel, sat down with Dr. Bearman to discuss autism research and began by referencing recent studies that indicate an increase in autism prevalence.

Dr. Insel:  So, as you look at this that question that everyone is asking is when they see the numbers now from the CDC where it’s gone from 1 in 1500 to 1 in 150 and apparently here in the fall of 2009 the figure that’s emerging is closer to 1 in 100. Meaning, that even since 2002 there has been a very profound increase in the number of children being diagnosed with autism.

Dr. Bearman: And Autism Spectrum Disorders.

Dr. Insel:  Autism Spectrum Disorders?

Dr. Bearman: Well that’s, an important distinction. I mean obviously there’s a profound increase in Autism and Autism Spectrum Disorders.

Dr. Insel: Is there an increase in the number of children with the disorder or with the Autism Spectrum Disorder or does this largely reflect the change in the way the diagnosis is used or some sort of increase in ascertainment?

Dr. Bearman: Well, I think that’s the big million dollar question. Our work which arises from California can, show that changes in diagnostic processing and diagnostic criteria I would say the period from 1992 to 2005 the changes in diagnostic criteria over that period that operate on the border between autism and mental retardation can be associated with about a quarter of the increase prevalence. Over that same period there has been a really fundamental change in the ascertainment, you can see that in lots of ways, but the most obvious way to see the changes in ascertainment, is to see that the social economic status gradient that used to be present for autism, the fact that children living and residing in wealthy communities are more likely to get a diagnosis, and that gradient largely disappears.

Dr. Insel: What seems important Peter in the way you’ve done this rather than you answering the question to say it’s increase, not increased your answering the question by what proportion of increase can be explained by separate factors because everybody’s pointing to changes in diagnosis, changes in ascertainment the way in which services may affect the use of the diagnosis. So what everybody really wants to know at the end of all this, is that actually are more children affected with the disorder or will 100 percent of this increase in prevalence be explained by these other factors?

Dr. Bearman: Our strategy is to try to decompose this increase into its constituent elements. Some component of that is increased ascertainment, some component of that is diagnostic change in diagnostic criteria, some component of that arises from already known risk factors, such as increases in parental age are associated with greater probability of genome mutations that could lead to copy errors that are associated with neurodevelopmental disorders. So social demographic changes that are affecting all western countries, the United States, and also California, can express themselves in increased incidence of autism on top of diagnostic ascertainment dynamics. I think the trick to figuring out how to decompose this increase into its constituent elements is to pay attention to the two dimensions that are important. The first dimension is temporal just the fact of temporal change, we are in the period of increased prevalence and if we’re in a period of increased prevalence and at the same time for example there’s also an increase in older parents. The risk associated with older parents will naturally appear to be greater now than it was a decade ago. So paying attention to temporal heterogenic is important. The other part of our work I think that’s  the most exciting is to pay attention to the spacial heterogenic and the fact that we can observe very strong,  very distinct, very stable clusters of increased risks for autism at very fine spacial resolution. For example, in California, there’s a very clear cluster in about 20 kilometers by 50 kilometers in which the relative risk for autism not, Autism Spectrum Disorders but autism itself is significantly higher over every year of observation that we make than any other place in California. That invites a couple of considerations, first, it invites the recognition that if you observe local spacial clustering whatever causes some components of the increased prevalence in autism it is not a global treatment. Secondly, it invites us to ask, well is there something in that local area that is driving an increased prevalence that could be a shared toxicological environment, it could be a virus that moves through and spreads from person to person and affects children in utero. Or it could be a piece of an ascertainment process which would be the diffusion of information from parent to parent as they learn how to recognize some symptoms for autism which have no biological markers.

Dr. Insel: From what you know now when you add all of those together how much of the increase can you explain?

Dr. Bearman: Well that’s a complicated question, but I think we can pretty uniquely associate about a quarter of the increase from the birth cohorts from 1992 to 2001 which is a lot, to diagnostic change on the border between diagnosis and mental retardation in autism. I think we can associate about 16 percent of the increase on the other border between autism and other neurodevelopmental disorders on the spectrum: Asperger’s, PPDNOS etc. And those are largely non over-lapping components of increase, so that’s about 40 percent. I think the spacial clustering itself adds another few percent. I would say I am confident that 40 percent of the increase I think I know what caused that. That leaves a lot of increase left, 50 percent is a lot to look for still.

Dr. Insel: Any ideas about what’s driving that other 50 percent?

Dr. Bearman: Well, some is genetic. I think that the increased parental age accounts were 11 percent of the increase over this period and that’s a lot and the mechanism by which increased parental ages expressing itself I think likely largely genetic. I think the tricky part is going to recognize that it would be harder now to find that 50 percent. It would look like it should be some toxicological environment that’s shared because of the spacial clustering. Because there’s a very strong process of amplification of the understanding of autism that leads to increased diagnosis as parents learn how to recognize symptoms a very, very, small event that would transform the environment five years ago, ten years ago, even you could imagine, 40 years or 50 years ago, when the moms of children with autism now were in utero as eggs- a very small event could cascade into a larger epidemic now.

Dr. Insel: So what do you tell parents who ask about this if you have friends who have autistic children and they say “What’s going on here? Why this epidemic?” What do you say in response?

Dr. Bearman: Well, I think parents are struggling to just enormously difficult to have a child with autism. It makes it very hard. I think parents are naturally searching for explanations, and I think that the message now is the search for a quick and dirty explanation might not be advancing science.

Dr. Insel: Thank you very much.  Good discussion.

Links on Autism

http://www.nimh.nih.gov/health/publications/autism/index.shtml

A Message from the Playground

Old Merry-Go-Round

“I can do all this through him who gives me strength.”

Philippians 4:13, NIV

I was thinking about this today, remembering the playground as a child.  I absolutely understood “the merry-go-round.”  I believed deep-down that it had been invented for just me.  It fit me, very well.  I like pushing around and around, and when it started to get beyond me, I would fling myself on to the spinning platform.

If I made it, the battle was only half-done.  Now, I had not only had to stay on, but I also had to avoid all other kids being spun off.  Just getting to your feet was a major undertaking. As the centrifugal force began to increase, the faster it went, the greater our momentum, and the more kids were thrown off; they tumbled into the mud.  There would be kids strewn all over the place, in heaps, crying. Clothes ripped, and knees bleeding. This wasn’t for ‘the faint of heart.’ This was war!

If somehow, you could make it to the center, you were the king of the “merry-go-round!”  For me at the ripe old age of 7, it was amazing!  I would exult and crow of beating my mechanical nemesis and blowing away the laws of physics.  But there are parallels here (surprise!)

Sometimes, life is a difficult ride.  But I know this.  If I can make it to the center, everything will be ok.  The dynamics of discipleship and mental (or physical) illnesses make it different.  We are all trying to find our way.  We stumble and fall (even hurled into the mud.)  But the center is right were we need to be.  It is the center that compels and calls. We were made for this.

We must continually fight to be at the center.  If you fall off, you can get right back up, and try again.  Nothing gets easier. Everyone scrapes their knees. I think one of the reasons that “heaven” is not talked about on every page of the Bible is we all would ‘mutiny,’ and head for its glorious shores. It’s going to be that good.

We will struggle.  But, we can struggle well with our illnesses if we we know His presence.  I get so my edges are frayed, and I feel like everything around me is dissolving.  My “fight or flight instinct” kicks in, and I feel frantic trying to hold together.  Being mentally ill is like flying a plane that has engine problems.  There is no escape; all you want it to cower and hide.  But you can’t. There is no place to go, but Jesus.

But there is a certain place, and when you battle to get to the center, you will find freedom from the pull of outward things. It is good to rest in Jesus, and abide in the center with him. Spiritually, you have been infused with His presence.  And you rise up!  You now discover that you have wings.

And the ‘merry-go-round’ has served its purpose. aabryscript

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Scare the Bullies: Psalms 86

14 O God, insolent men have risen up against me;
    a band of ruthless men seeks my life,
    and they do not set you before them.
15 But you, O Lord, are a God merciful and gracious,
    slow to anger and abounding in steadfast love and faithfulness.
16 Turn to me and be gracious to me;
    give your strength to your servant,
    and save the son of your maidservant.
17 Show me a sign of your favor,
    that those who hate me may see and be put to shame
    because you, Lord, have helped me and comforted me.

Ps. 86:14-17, ESV

This the last of three parts, and we should be impressed with its diversity. There are vista points here, where we can stop and wonder. I remember lounging in the California redwoods, just meandering and soaking it in. It basically undid me. And after awhile, I found it hard to speak. (Itself a minor miracle!)

But scripture can do this as well. When we really start looking, and praying, and meditating we start to appreciate all the Father has done for us. And it’s not just “deep thinkers,” who can do this.  Actually, deep thinking is a liability. It is the simple, the humble, the slow, those who have absurd patience– they are the ones who can do some serious reflecting. Children do it best I think.

Commentary

V. 14, is pretty much David’s reality. He is on Satan’s “hit list.” He has a “contract’ on his life. He must deal with this as he moves through his day. I can imagine that this could be quite corrosive and detrimental to your soul; your heart and your mind. He must have thought, ‘Can I really trust this person, does he have a dagger?’ I would have been a mess, twisted up with paranoia and fear.

V. 15, each word used in this verse is quite precise, each phrase carefully used. This is not David flattering God, it is not “boot-licking” mush. Rather, this verse is an accurate portrayal of the Lord God’s character. It is David’s appraisal of how he has experienced God, the things he has found out about Him. David has a long history with the Father, and he reminds himself of how good God really was.

V. 16, in this verse we see David appealing to God on the basis of relationship. Also, David speaks of a kind of “future grace.” Yes, good things have happened in his life, God things. But that isn’t enough for the present moment, and the future. David needs freshness, a grace tailored just for today, custom built.

David’s source for his survival is in God’s cupboards. He knows this, and boldly steps up and asks for it. Interestingly David doesn’t come as an anointed king, having a majestic aura. When he refers to himself, it is as ”the son of your maidservant.”

V. 17, “The Message” Bible is interesting in how it translates this particular verse:

“Make a show of how much you love me 
      so the bullies who hate me will stand there slack-jawed, 
   As you, God, gently and powerfully 
      put me back on my feet.”

ybic, Bryan

kyrie elesion. (Lord, have mercy.)

_________________

I wrote this on Feb. 21, 2012 and it was posted on my second website, “Psalmslife.com.” If you happen to like this kind of teaching, there is a “whole boatload” on that site, 70-80 posts just on the Psalms. I would be honored if you would check it out.  –B.

Back When We Were Grown Ups

 

“I promise you that you cannot get into God’s kingdom, unless you accept it the way a child does.”  Mark 10:15, CEV

“So Jesus called the children over to him and said, “Let the children come to me! Don’t try to stop them. People who are like these children belong to God’s kingdom.”   Luke 18:16, CEV

One of the essential tenets of real discipleship is Jesus’ insistence on his disciples becoming children.  It actually is the entry point for all believers.  Everyone who really believes begins here, at ‘childlikeness’.

It’s interesting to note that ‘religion’ moves in the opposite direction– a level of sophistication is cultivated.  One becomes intellectual, emphasising the ‘academics’ over gentleness and goodness or love.

I think that there is an excessively high appreciation for broad-mindedness, but it is a cultivated, savoir-faire that is really is nothing but an embarrassment to the Kingdom of God.  It seems our discipleship is strongest when it is simplest.  Humbling ourselves is what makes us incredibly authentic– at least from His point-of-view.

And maybe–  just maybe, ‘becoming small’ is exactly what ‘the doctor has ordered’.  We need this, it needs to be imbedded into our hearts, and altering the way we encounter life.  If we are going to be real, then we must become children.  Becoming a child is an imperative.

Who do we think we are?  Often, we start out ‘broken’.  We esteem gentleness and brokenness.  We understand that the most valuable possession we can possess is a ‘childlikeness’. This can be understood by everyone we encounter– especially believers.  But this is only our starting point, we do not outgrow this, never.

Christians are set apart by their childlike heart.

“But I am calm and quiet,
like a baby with its mother.
I am at peace, like a baby with its mother.”

Psalm 131:2

ybic, Bryan