Tuesday, February 26, 2019

A strengths-based approach to autism

You hear your spouse breathing nearby and you instantly get angry. Your 6-year-old yawns and it triggers a fight-or-flight reaction in you. You avoid restaurants because you can’t stand the sound of chewing. Sounds other people don’t even seem to notice, drive you up a wall. You might have misophonia.
What is misophonia?

People with misophonia are affected emotionally by common sounds — usually those made by others, and usually ones that other people don’t pay attention to. The examples above (breathing, yawning, or chewing) create a fight-or-flight response that triggers anger and a desire to escape. This disorder is little studied and we don’t know how common it is. It affects some worse than others and can lead to isolation, as people suffering from this condition try to avoid these trigger sounds. People who have misophonia often feel embarrassed and don’t mention it to healthcare providers — and often healthcare providers haven’t heard of it anyway. Nonetheless, it is a real disorder and one that seriously compromises functioning, socializing, and ultimately mental health. Misophonia usually appears around age 12, and likely affects more people than we realize.
What causes misophonia?

New research has started to identify causes for misophonia. A British-based research team studied 20 adults with misophonia and 22 without it. They all rated the unpleasantness of different sounds, including common trigger sounds (eating and breathing), universally disturbing sounds (of babies crying and people screaming), and neutral sounds (such as rain). As expected, persons with misophonia rated the trigger sounds of eating and breathing as highly disturbing while those without it did not. Both groups rated the unpleasantness of babies crying and people screaming about the same, as they did the neutral sounds. This confirmed that the misophonic persons were far more affected by specific trigger sounds, but don’t differ much from others regarding other types of sounds.

The researchers also noted that persons with misophonia showed much greater physiological signs of stress (increased sweat and heart rate) to the trigger sounds of eating and breathing than those without it. No significant difference was found between the groups for the neutral sounds or the disturbing sounds of a baby crying or people screaming.
The brain science of misophonia

The team’s important finding was in a part of the brain that plays a role both in anger and in integrating outside inputs (such as sounds) with inputs from organs such as the heart and lungs: the anterior insular cortex (AIC). Using fMRI scans to measure brain activity, the researchers found that the AIC caused much more activity in other parts of the brain during the trigger sounds for those with misophonia than for the control group. Specifically, the parts of the brain responsible for long-term memories, fear, and other emotions were activated. This makes sense, since people with misophonia have strong emotional reactions to common sounds; more importantly, it demonstrates that these parts of the brain are the ones responsible for the experience of misophonia.

The researchers also used whole-brain MRI scans to map participants’ brains and found that people with misophonia have higher amounts of myelination. Myelin is a fatty substance that wraps around nerve cells in the brain to provide electrical insulation, like the insulation on a wire. It’s not known if the extra myelin is a cause or an effect of misophonia and its triggering of other brain areas.
There is some good news

Misophonia clinics exist throughout the US and elsewhere, and treatments such as auditory distraction (with white noise or headphones) and cognitive behavioral therapy have shown some success in improving functioning. For more information, contact the Misophonia Association. We are in the midst of an unprecedented epidemic, with several million people currently addicted to opiates in the United States, including both prescription drugs and heroin. Much discussion has been devoted to the visible tragedy of overdoses, which are killing dozens of people every day. Less attention has been paid to a more subtle, but damaging and painful, component of this epidemic: how a person suffering from opiate addiction affects his or her family members.
The effects of substance use disorder on loved ones

Substance use disorders (SUDs) are brain diseases that can negatively affect a person’s behavior and fundamentally alter one’s personality. It is not uncommon for people suffering from SUDs to act in a way that is alienating and destructive to their friends and families. For example, a common scenario is theft of property or money to purchase drugs. Families can feel hurt and betrayed by this behavior, especially if they don’t understand that addiction is a disease. Family members can feel lied to, cheated, manipulated, and at times even threatened. With any signs of progress, with each stay in rehab, they become hopeful, only to have their hopes dashed again and again.

What can you do if you have a loved one addicted to opiates? This question has no easy answers, but does have several distinct schools of thought.
The “tough love” approach

A common belief is that a “tough love” approach will help family members avoid enabling the addiction. The thinking is that a family member can make an addiction worse by removing or cushioning the natural consequences of the addicted person’s actions, so that they do not have an incentive to recover. For example, if a person spends all his or her money on drugs, and you give them more money for food, you have enabled their addiction. Otherwise, presumably, they would go hungry, and would start to understand the connection between their drug use and their hunger.

In this example, the tough love approach suggests that the thieving offender be forced to “find their bottom,” or become miserable enough to understand the inescapable need to seek treatment. This response would also serve the purposes of protecting the family’s finances and property and setting up physical and psychological boundaries, so that the members of the family can move on with their lives.

Unfortunately, with our current opiate crisis, “finding your bottom” all too commonly can mean death from overdose, especially with our streets being flooded with fentanyl, a deadly opiate that people often mistakenly buy, looking for heroin.
Plain old love as an approach

Gradually, a more nurturing and supportive approach to substance users is supplanting the tough love approach. This is partly in response to the sheer number of overdose deaths. It is also due in part to the increasing awareness of addiction as a disease that needs to be met with empathy, rather than a moral failing that deserves scorn and punishment. Instead of tough love, people are simply using plain old love to try to coax their family member back into the fold, and hopefully encourage them to seek treatment. Each slip or relapse is met with support and patience, as families increasingly understand the chronic and relapsing nature of addiction. Many believe that this is a safer and more humane way to respond to addiction.

A tenet of 12-step ideology is that addiction is a “disease of isolation,” with its hallmarks being secrecy and disconnection. Therefore it makes sense that human connection would be an important component of treating addiction, and that a strategy of loving engagement might be more effective than one that shuns the sufferer or blames the victim. Through engagement and connection, a lifeline to treatment can be offered.
And about the suffering of family and friends…

It is essential to pay attention to the well-being of the family members themselves during all of this, as having a loved one with a substance use disorder can be profoundly stressful and disruptive, even traumatic. Every situation is different, but certain general principles apply. Psychologically, it is critical to be as open with your social community as you feel comfortable being, and to rely on the support of others. Many people find getting involved in a recovery group such as Al-Anon or Nar-Anon to be invaluable. Sometimes suffering alone can be the worst type of suffering. Family therapists and addiction specialists may also be helpful.

On a practical level, one must protect one’s finances, and you may need to change passwords or secure valuables if theft is an issue. If living with your addicted loved one is just too stressful, alternative living arrangements may be necessary. Some families may need to change their locks. Families must decide whether they truly wish to go deeply into debt to fund a second or third stint at rehab.

One of the most difficult situations that families can face is coping with a loved one who is actively abusing opiates. With our current epidemic, it is becoming distressingly common. This situation is always replete with guilt, shame, and stigma for everyone. A frequently used metaphor (borrowed from airline safety videos, yet commonly employed in recovery centers) is that it is critical that you put on your own oxygen mask before trying to help others do the same, so that you are able to remain functional in order to help. This fully pertains to addiction. We suffer alone, but we recover together. At our son’s 18-month checkup five years ago, our pediatrician expressed concern. Gio wasn’t using any words, and would become so frustrated he would bang his head on the ground. Still, my husband and I were in denial. We dragged our feet. Meanwhile, our son grunted and screamed; people said things. Finally we started therapy with early intervention services.

A few months later, after hundreds of pages of behavior questionnaires for us and hours of testing for Gio, we heard the words: “Your son meets criteria for a diagnosis of autism spectrum disorder…”

Our journey has taken us through several behavioral approaches with many different providers. Today, Gio is doing very well, in an integrated first grade in public school. He can speak, read, write, and play. His speech and syntax can be hard to understand, but we are thrilled that we can communicate with him.
The difference between typical and functional

Longtime autism researcher Laurent Mottron wrote a recent scientific editorial in which he points out that the current approach to treating a child with autism is based on changing them, making them conform, suppressing repetitive behaviors, intervening with any “obsessive” interests. Our family experienced this firsthand. Some of our early behavioral therapists would see Gio lie on the ground to play, his face level with the cars and trucks he was rolling into long rows, and they would tell us, “Make him sit up. No lying down. Let’s rearrange the cars. Tell him, they don’t always have to be in a straight line, Gio!”

To me, this approach seemed rigid. We don’t all have to act in the exact same way. These kids need to function, not robotically imitate “normal.”
Why not leverage difference rather than extinguish it?

We naturally gravitated towards Stanley Greenspan’s “DIR/Floortime” approach, in which therapists and parents follow the child’s lead, using the child’s interests to engage them, and then helping the child to progress and develop.

Mottron’s research supports Greenspan’s approach: study the child to identify his or her areas of interest. The more intense the interest the better, because that’s what the child will find stimulating. Let them fully explore that object or theme (shiny things? purple things? wheels?) because these interests help the developing brain to figure out the world.

Then, use that interest as a means to engage with the child, and help them make more connections. Mottron suggests that parents and teachers get on the same level with the child and engage in a similar activity — be it rolling cars and trucks, or lining them up. When the child is comfortable, add in something more. Maybe, make the cars and trucks talk to each other.

But, don’t pressure the child to join the conversation. Let them be exposed to words, conversations, and songs, without forced social interaction. This is how early language skills can be taught in a non-stressful way, acknowledging and aligning with the autistic brain. The ongoing relationship and engagement will foster communication.

Basically, what both Greenspan and Mottron are advocating are methods of teaching autistic children to relate, adapt, and function in the world, without “forcing the autism out of them.”

The concept of accepting autistic kids as they are, and incorporating the natural ways they think into educational and therapeutic techniques, feels right to me. Gio is different from most kids, and really, he’s not interested in most kids. Our attempts to push him to participate in “fun” group activities like soccer, Easter egg hunts, and birthday parties have all been spectacular failures. Maybe the real failure was ours: by pushing him to “fit in,” we deny his true nature. Yes, the way he thinks is sometimes mysterious to us, but he clearly has great strengths: a remarkable ability to focus and persevere, to experiment with his ideas, and to follow his vision.

World-renowned autism expert and animal rights activist Temple Grandin (who is herself autistic, and very open about her preference for animal rather than human companionship!) sums up Mottron’s approach perfectly: “The focus should be on teaching people with autism to adapt to the social world around them while still retaining the essence of who they are, including their autism.”

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