Dr. Marcia Eckerd has been in practice as a licensed psychologist since 1985. I am on the CT ASD Advisory Council and the Clinical Advisory Committee of the Aspergers/Autism Association of New England, as well the professional advisory board of Smart Kids with LD. Aspergers101 is honored to offered the knowledge and experience of Dr. Eckerd through her informative blogs!
Respect yourself. As hard as things have been, focus on your strengths. Your path, however bumpy, has gotten you the be the person you are. You are unique, and no one else can contribute your insight and perspective.
Reach out for support. If you have family or friends who “get it,” that’s terrific. If not, there’s communities of support out there on Facebook, like “The Aspergian Has An Article for That” and “Autism Support and Discussion Group”. People have had similar experiences and are working on the same issues.
Advocate for yourself. No one can see inside you. Consider how best to communicate to the person who is listening. With some people, you can probably say what you want plainly. For others, help them understand. You might try this: say something positive (I want to do a good job), then your need: (but I need a quieter place to work) and then something positive (I’ll be able to get that done). Or, another example: positive (I want us to get along), need (so I need you to be clear and not expect I know what you want), positive (that will really help).
Take care of your health. Your body is critical to your mood, your ability to think and your wellbeing. Too many people don’t get enough sleep, eat well or take the time to take care of themselves. Treat yourself to a recharging walk to somewhere you enjoy (or nap), whatever works for you.
Meditate It’s been proven that mediation can structurally change your brain to be more stress resilient, and it’s like creating a center of calm for yourself. There’s many ways to do it (mindfulness, repeating a phrase, yoga, even walking). You’ll find great apps to lead you through mediation like Calm, Headspace and Insight Timer.
Know yourself Know your triggers for emotional and sensory overload and early warning signs in your thinking, feeling or body that say it’s getting too much. Have strategies you’ve pre-thought for calming down, whether it’s something like taking a walk, listening to music, doing a minute or two of meditation, anything that works.
Have strategies If you can’t escape going into difficult situations, have strategies for handling it. Short doses, taking time outs. Use self-advocacy to share that this situation is difficult and what might be helpful. If that doesn’t work and this situation keeps recurring, there’s something fundamentally wrong with this situation and you might have to think about how to change it.
Have compassion for yourself We all do our best and no one is perfect. You may have made mistakes and regret them but that’s how we learn. You need to give yourself the compassion you’d want to give a friend in the same situation.
Let go of anger This saying is allegedly attributed to the Buddha: He who holds onto anger is like the man who drinks poison and expects the other person to die. Anger stimulates your stress response so your autonomic nervous system stays in fight/flight mode. This is bad for your health, your immunity and your outlook on yourself and life. I’m not saying forget, just do whatever re-centers your focus on how you overcame (or can overcome) whatever obstacle you encountered. You’ve undoubtedly had some good experiences; focus on them as balancing the negative.
Learn the serenity prayer. Give me the serenity to accept what I can’t change, the courage to change what I can, and the wisdom to know the difference.
People with Asperger’s usually collect labels like ADHD, anxiety disorders, or bipolar disorder before they’re diagnosed with AS. The label that annoys me is Oppositional Defiant Disorder. Is there a difference between people whose Asperger’s-related behavior is misunderstood and ODD? I find that ODD is sometimes simply a description of behavior without a cause.
Insurers ask for diagnoses based on ICD 10, the “handbook” of diagnoses. One of the official ICD 10 descriptions of AS is that it’s a “neuropsychiatric disorder whose major manifestations is an inability to interact socially; other features include poor verbal and motor skills, single mindedness, and social withdrawal.”
ICD 10 describes ODD as a behavior disorder and a psychopathological disorder. It’s described as a “recurrent pattern of negativistic, defiant, disobedient, and hostile behavior toward authority figures.” The criteria include “frequent occurrence of at least four of the following behaviors: losing temper, arguing with adults, actively defying or refusing to comply with requests or rules of adults, deliberately annoying others, blaming others for own mistakes, and being easily annoyed, angry or resentful.”
ICD 10 is right in my experience in describing those with Asperger’s Syndrome as “single minded.” This is a real strength when doing tasks, following rules and being honest. However, single mindedness can also include inflexibility or even severe rigidity in sticking to a point of view.
When an inflexible demand is made of an inflexible person, you have rigidity meeting rigidity. That’s not going to work. For people with AS, what’s being perceived as oppositional, hostile or rule breaking is actually more about having a fixed way of viewing the world.
Especially when rules or demands seem illogical or unfair, those with AS can dig in and stand their ground. Many with AS and NLD also have concrete or literal thinking, which adds to the mix of misunderstanding and “rule breaking.”
Depression is more frequent in those with AS than the general population, and the struggles of those with AS often contribute to the development of depression. The obvious question is, what resources are available and what do we do? First, we should not accept depression as just a normal part of AS, especially if it’s interfering with everyday life. Secondly, we need to recognize the symptoms to help as early as possible. And lastly, we need to research the supports that are available – how you can help yourself or others right now – and what resources still need much improvement so that you can call upon action in your community.
Being aware of the symptoms of depression is critical:
sleep difficulties, either sleeping more or less (insomnia, early morning waking);
changes in appetite (either more or less hunger);
weight gain or loss;
a failure to enjoy normal sources of pleasure;
sadness, guilt or hopelessness;
crying or unusual irritability.
Someone who is clinically depressed sees the world in the above ways each day. It’s important for the individual or those around to seek professional help.
Medication can help many with depression, as can Cognitive Behavioral Therapy. Although CBT is a slower process with AS individuals and needs to be adapted to their thought process. Some studies suggest neurobiofeedback can be helpful with depression and there are a few early studies of its use with ASD patients. For those who prefer to avoid medication, this is certainly worth exploring. It is best to come to your medical sessions with the knowledge of various treatments so that you can be prepared to discuss what is best for you.
It’s important to think about addressing the factors that can result in depression.
Depression is most common in adolescents and young adults with Asperger’s, and particularly in those with stronger intellectual and verbal skills. That means college students with Asperger’s are at a very high risk for depression. This is particularly true for freshmen, who are transitioning to the college experience. Although I’ve seen this in later years as well when students are dealing with more challenging classes, social issues, and upcoming graduation as triggers.
Let me tell you about one college student’s experience with depression:
Franklin went off to a good college based on his excellent academics in high school. However, he’d been provided with executive function scaffolding all through high school. His parents and a teacher had helped him organize his time and initiate his work. The school counselor and his parents had feedback from teachers if he was falling behind on assignments.
In college, he was on his own.
He was supposed to check in with the disability office, but he resisted being seen as needing help. Franklin had challenging classes and had taken on a very full load of five classes; he had always set his standards and expectations of himself very high. Franklin began falling behind in writing papers for his English literature class because writing was difficult and he wrote slowly. His effort was going into writing, so he fell behind on the reading. He tended to procrastinate as the pile of work grew. Franklin was embarrassed at being behind, so he stopped going to English. He also was stressed by feeling at a loss in terms of the 24/7 social demands.
As you might expect, all of this stress was a trigger for depression. In Franklin’s mind, one was either a success or a failure, and he was a complete failure.
Parents of any child with differences struggle with feeling isolated. One of the challenges for families with Aspergers Syndrome (AS) and nonverbal learning disabilities (NLD or NVLD) children is that these children don’t look different. They’re bright and verbal; their quirkiness, sensitivities and apparent oppositionalism aren’t easy to understand.
As a result, parents often feel blamed for their children’s special challenges. I know one mother who was told bluntly by her brother, “You must be doing something wrong. Give me two weeks with that kid in my house and I’d straighten him out.”
Parents are well aware that rigidity meeting rigidity doesn’t work and only leads to meltdowns.
Aspergers and NLD children require unique parenting skills based on understanding, acceptance, and appropriate interventions. Blaming and punishment don’t make family life any better and don’t encourage positive growth in children.
Why are there higher rates of depression in those with AS? There may be some genetic predisposition to depression for some, but this doesn’t explain most cases of depression. One reason for depression is isolation and loneliness. Despite the misconception that people with AS prefer being alone, research shows that many with AS want friends. Children and teens with AS are often lonely and feel their friendships aren’t “quality.” They’re looking for company, safety and acceptance to give them a sense of confidence. Those who have friends may have a lower tendency towards depression. However, many with AS who experience social anxiety or lack social skills in joining, starting, and maintaining friendships don’t have the tools to have the friends they want.
Another reason for depression is the experience of being bullied.
Studies have suggested that a majority of those with AS experience bullying. This isn’t surprising given the drive towards conformity and the emphasis on social status among middle school children in particular, but also among high school students and even older individuals.
There isn’t a cultural norm of tolerance of neurodiversity, or even of most kinds of diversity.
Qualities of those with AS that engender bullying are
lack of awareness of social cues;
interests or behavior labeled ‘odd’;
AS individuals have difficulty flexibily and astutely responding to bullies. Some with AS tend to be submissive and anxious in response, which empowers bullies to continue. Still others lash back, which gets them in trouble.
In my own practice, my Asperger’s teenagers and young adults have often been bullied and carry the wounds of bullying deeply ingrained in their sense of self-esteem.
Teachers, parents and partners come to me asking my help to understand the behavior of someone with Aspergers. Usually they’re frustrated by behavior of some kind that’s perceived as resistance to what seems to be needs and expectations that are “normal,” or neurotypical. The neurotypical teacher, parent or partner wants to have things go more smoothly.
the individuals with Aspergers (neurodiverse) are often frustrated by the
expectations they face which seems to suggest a basic lack of understanding of
their needs. The assumption is that if those who are neurotypical “got it,”
expectations would be more realistic and problems such as difficulty
transitioning, social anxiety and sensory issues would be taken into account.
They may feel that their meltdowns are a direct result of their environment.
I find myself in the role of translator of the perspective of the neurodiverse individual to the neurotypical parent, teacher or partner, and the translator of the perspective of the neurotypical to those who are neurodiverse. In my role as translator, I can be free of judgments. I’m simply trying to help people understand each other.
Many neurotypicals are grateful to understand a neurodiverse perspective. However, I’ve also been told that clarifying the situation from the neurodiverse point of view is simply making an excuse for the neurodiverse person’s behavior. I’m excusing rather than explaining. I’m not doing what’s wanted, which is to get the neurodiverse individual to stop acting neurodiverse and start acting neurotypical.
that the neurodiverse perspective is only an excuse rejects the reality of the
needs of the neurodiverse person. It’s saying that these needs aren’t real but
represent oppositionalism, avoidance, an attitude problem, or even selfishness.
If you have: lost interest in your usual activities; trouble sleeping, wake up early or sleep all the time; a change in appetite (more or less); withdrawn from people with a down mood (for Aspies it might be sad, irritable or a sense of hopelessness – whatever negative mood or thoughts you recognize), you have what we call major depression.
For this, you probably need professional help. Things are not hopeless but being depressed is like looking through dark glasses. While people with Asperger’s are prone to depression because of challenging life experiences, clinical depression is not part of Asperger’s Syndrome and usually responds to treatment. For those struggling with lower level depression, you might still consider therapy to look at ways to make life changes and feel better.
For finding professional help and other resources, Autismsource.orgis a gold mine of resources including lists of local therapists in your area.
Psychologists, social workers, psychiatrists, advanced practice registered nurses (APRN), and other specialties all can provide therapy. Individuals should be licensed providers in their states. You can find this information by looking at their websites.
Only psychiatrists, other MDs (medical doctors), and APRNs can provide medication. Medication has been demonstrated to be effective in treating depression. Often a combination of medication and therapy are most useful. The form of therapy most recommended is CBT (cognitive behavioral therapy). MBCT (mindfulness-based cognitive therapy) has been shown to be effective for depression although there isn’t research on it with people on the spectrum. Most therapists specializing in working with those with ASD know how to modify traditional CBT to best work with those on the spectrum.
It can be very challenging, certainly in parts of the US, to find therapists who take insurance.
The prevailing cost of therapy varies widely across the country. Some therapists (usually psychologists) offer sliding scale fees or have some lower fee slots, so it’s worth calling and asking. Clinics generally take insurance but you want to be sure that the therapist is familiar with ASD. The first thing you should do is call the number for patient or customer service on your insurance card and ask for a list of providers (psychologists/psychiatrists/social workers) in your area. This way you can know all the providers near you who are in network with your insurance plan before you call around clinics. In network providers have more affordable rates than out of network providers. It is important to inform yourself about your insurance plan and coverage before you begin the search.
Also, check providers with Medicaid if you have it. Any MD or APRN will know about treating depression with medication. Some therapists who accept Medicaid might be experienced with ASD even if they’re not on a directory for ASD.
Mindfulness, meditation and self-talk are important ways of helping yourself when you’re depressed, stressed out, anxious or emotional. They’ve been shown to help handle feelings and are actually often used as components of the most helpful forms of therapy, cognitive therapy.
Why is it important to talk about these three techniques, especially for those with Asperger’s?
Two typical traits for those with Asperger’s are black and white thinking and a tendency to ruminate, to stew thinking about something. With black and white thinking, we see things in extremes, all bad or all good. When we’re depressed, that tends to be all bad.
All bad isn’t realistic; life is always a mix. Things don’t always go wrong. People aren’t always hostile or rejecting. Ruminating means dwelling on something, usually negative when we’re depressed. As we dwell on our thoughts, they tend to become more dramatic, more overwhelming, more conclusive of our negativity. It’s like a downward spiral.
Both black and white thinking and rumination focus on the past, revisiting what has happened, or in the future, anticipating what might happen. We’re rarely in the present. Most often, at this exact moment, nothing too stressful is happening.
The point of mindfulness as an outlook, a way of being, is that it focuses on the present moment – our awareness of what’s happening right now.
Mindfulness exercises include activities that force us to focus on the here and now. Focus can be on attending to our breath, what we hear, bodily sensations, or what we’re doing, like the feelings of washing dishes, the soap on our hands, the feeling of the water, the texture of the plate and glass. This pulls us out of the past and future into the present, which tends to be calmer.
Meditation is a practice for both the body and mind.
When we’re emotionally aroused or stressed, our entire autonomic nervous system is activated. Blood pressure goes up, breathing changes, stress hormones race through our bodies, and every system is affected.
We can be stressed in this way both by what goes on in the moment and by what goes on in our minds – thinking about something can trigger the same physical stress response as being in that moment. Emotionally we’re at a high level of arousal, regardless of what’s happening in the moment. Meditation turns off the stress response, and teaches our bodies what Herbert Benson of Harvard calls the “relaxation response.” Meditation has actually been scientifically proven to structurally change the brain to be more stress-resilient.
I’m emailing with Kris Jones, an eloquent writer on Linkedin about his Asperger’s Syndrome. We’re talking about the stressors he experiences that can create extremely self-limiting anxiety. We’re going to use several blogs to talk about different stressors. Kris’s first stressor was his lack of self–fulfillment. One of the causes of this lack of self-fulfillment was Kris’ social anxiety.
Tony Attwood, expert on Asperger’s Syndrome, suggests that around 65% of adolescents with Asperger Syndrome have a secondary mood or affective disorder (such as depression or anxiety); most have anxiety.
Kris describes his thoughts and feelings which I’m calling social anxiety like so: “No one likes you. No one wants to know you. You are not interesting. Stay where you feel most comfortable – inside your house and away from others. You are not fit to be out there amongst the human race.” He says that this is representative of how he feels and it is what keeps him from going out and mingling with others his age. Even though he knows these thoughts about himself aren’t true, he can’t get past the anxiety.
Let’s break this down into parts. What causes this social anxiety?