Alone Time for Teens with Aspergers is Crucial: Allow Them Their Space

Breathing room or ‘alone time’ is good for anyone, but for someone on the spectrum it is crucial. When Sam was very young I found myself, as his mother, wanting to arrange play dates with other children who were not exactly knocking on our door for playtime. My reasoning was he must be lonely, so I did everything in my power to elicit playmates. Offering the best snacks, coolest toys, or excursions to area attractions, but it didn’t take long before no one came around.

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My son was alone.

What I’ve come to realize is that this is alright with Sam.

He really prefers time alone verses a party. Really. It was me who was projecting my ideas of companionship on him, a neuro-typical brain trying to outguess his autistic brain.

Fast forward 10 or so years and his contentment with an occasional relationship is greatly satisfying for him, and he does have a few. His time alone, however, is a structured necessity for him that keeps him grounded and on-task for the really important things such as work or school.

So as parents we should relax just a bit. Although socialization, to a degree, is important, allow your Aspergers child to be their own person.

Time to read, explore, invent, create or yes, online gaming to a degree can all be good for someone with Aspergers Syndrome. Sam even found companionship via social media sites.

If I could look back at my earlier self I would say “Relax just a bit. He is not as uncomfortable not being invited to parties classmates give, it is only me who is uncomfortable with this”.

Look a bit closer at your Asperger child to understand just how far to push socialization at an early age. You might be going to great means only to satisfy yourself, when in reality a simple outing like a trip to a museum with you might more than suffice.

by Jennifer Allen

Seeking Help For Depression with Aspergers: The Specifics

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in your usual activities; trouble sleeping, wake up early or sleep all the time; a change in appetite (more or less); withdrawn from people with a down mood (for Aspies it might be sad, irritable or a sense of hopelessness – whatever negative mood or thoughts you recognize), you have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.

Depression, Aspergers, Help, Resources

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.

Professional Help

For finding professional help and other resources, Autismsource.org is a gold mine of resources including lists of local therapists in your area.

Online directories:

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.

Self Care Strategies

Managing the Crushing Blow of Disappointment & Lies

Aspergers101 for the Parent

As neurotypicals, disappointments come early in life. We learn quickly that all we desire is not all that is intended for us. We learn, through a trail of unrealized dreams, to be content with our lot or find another pathway toward our goal(s).

Having a child on the autism spectrum redefines the above lesson. Managing your ASD child’s crushing blow of disappointment comes with a different manual altogether. When it comes to disappointment through deceivers and manipulators…those with an Autism Spectrum Disorder are susceptible to exploitation. ASD is, at its core, a disorder of social functioning and cognition. Just saying old phrases like, “That’s life” or “Pull yourself up by your bootstraps” or “That’s how the ball bounces” makes no sense to them and sets them off into further confusion and strife. Their brain is wired differently so their expectations and heightened sense of right and wrong may bring on pain when the expected turns unexpected. Knowing how to help them is first to understand that your autistic child is wired differently and being lied to will take more than standard sayings to overcome. In other words, like everything else in parenting a child on the autism spectrum, it may take a well thought out talk but you can relieve your child’s mind….and yours by a few steps.

Their brain is wired differently so their expectations and heightened sense of right and wrong may bring on pain when the expected turns unexpected.

-Jennifer Allen

Manage their Expectations

In looking back on raising a son on the autism spectrum, this was and still is an everyday activity. Managing their expectations takes time, communication and preparation. My part as a parent has waned a bit as our son ages, as I am beginning to see how he attempts to prepare himself for daily potential challenges. This preparation begins with a comforting knowledge of facts. Let me give an simplified example but one that you can plug most any upcoming event into. Remember, this is just about managing the small unknown(s). We will get into the larger scenarios later.

Here is the situation: Church is going to be extra crowded on Sunday because it’s Easter Sunday. We then think of the challenging ramifications that overcrowding may bring and discuss solutions.

The Challenges Discussed:

  1. We may not be able to sit in the same pew/area we usually do
  2. There may be louder sounds with more children in the service
  3. It may take us longer to go eat lunch as crowds are larger during Easter Sunday at restaurants

So we go over the potential challenges and discuss the following choices to avoid disappointment, expectations or meltdowns:

The Solutions Discussed:

  1. Let’s leave extra early to get our usual seating -or- would we take the opportunity to sit elsewhere and see what that is like?
  2. With the onset of more crying babies, would you want to use noise-cancelling headsets? Go to foyer if it gets too loud? Other suggestions?
  3. Since it may take longer to get to a restaurant can you set in your mind it might take 30 minutes longer than usual to eat lunch? Would you rather forego crowded Easter Sunday restaurant crowds and eat at home?

The challenge/solution exercise helps to prepare your child for what disappointments might be just ahead. The less amount of surprises the better for a factual mind. This activity prepared our son throughout his young life and now we are starting to see him work through this for himself as an adult. This practice certainly helps prepare for the unexpected but what happens when they are promised something and it’s never delivered. Or a blatant lie is told to them and they keep trusting the source will do as they say but you realize they never will? In other words, how to you explain to the pure believer that the world is corrupt and sometimes people are going to lie to you. Most deal with this topic when their children are very young, but to the parent of a child with Autism it’s ongoing. You know they take everything literally and hidden meaning or ulterior motives is a concept most difficult to grasp. For the autistic brain it’s confusing, painful and sometimes paralyzing.

ABA and Aspergers: The Three Step Plan You Can Use

The main use of ABA for individuals on the autism spectrum is to decrease challenging behaviors and increase appropriate skills.

Little girl hiding behind her hands - copyspace

Here are the three steps for utilizing ABA to decrease challenging behaviors and increase appropriate skills:

Step 1: Assessment

The first step in decreasing problem behavior is to conduct a functional behavior assessment, which determines the function of challenging behavior.

Appropriate skills including academic, language, and daily living skills are assessed in a similar way. The founding father of ABA, B.F. Skinner, wrote the book Verbal Behavior in 1957. In the book, language is analyzed based on the function. Assessments like the Verbal Behavior-Milestones and Assessment Program (VB-MAPP; Sundberg, 2008) are utilized to assess the persons’ language skills, as well as other appropriate skills like academic and daily living skills.

Other assessments utilized in ABA are the Assessment of Basic Language and Learning Skills-Revised (ABBLS-R; Partington, 2006) and the Assessment of Functional Living Skills (AFLS; Partington & Mueller, 2013).

Step 2: Developing a Plan and Treatment Goals

Deciding if a Job is Right For You: The Work Assessment

If you were given the chance to work at a job you were interested in for a few hours to assess your skills and abilities, and to decide if you are comfortable and really enjoy it before starting the application process would you do it?

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This is called a work assessment, and it is imperative to future success. Vocational rehabilitation offices offer these kinds of important services for individuals with Asperger’s. A work assessment also work in tandem with the inventory assessments.

Work assessments are very beneficial. They allow an individual to work in a simulated or actual work environment for a few hours to decide if it fits the negotiable and non-negotiable parts of their inventory assessment. It allows an opportunity to observe the individual’s interaction with others, hard and soft skills, physical capabilities.

23 Truths I learned From Social Skills Training

When I was diagnosed with Aspergers, my parents enrolled me in 48 hours a week of social skills and coping mechanism training. That was 10 years ago. These are 23 friendly suggestions I still find to be true and carry with me today.

Alix Generous

Alix Generous

My 23 Truths

  1. Never follow advice that you intend to carry out by hurting another living being.
  2. Find what you love and pursue it even if it means working twice as hard in other areas of your life in order to do so. It can be one thing or it can be many. Obsessions and interests can lead to successful careers. Additionally, if you’re interested in a task you’ll do better at it.
  3. Following blind happiness is a better decision than choosing certain unhappiness, as long as you apply appropriate practical skills and common sense (which can be learned in a Google search). No matter where you are and what situation you may be in, this isn’t your parent’s, boss, or teacher’s life, it’s your own. With the accumulation of knowledge and self discovery you can make choices that will shape the life you want. If you want to be a scientist, do what you need to in order to make that happen. That path is not exactly linear, you might have to do things differently than others, but that doesn’t make it bad or wrong to pursue. I had an incredible amount of difficulty socially when I started college in Charleston, SC. It was the weirdest feeling because I had wonderful friends there as well as great education and academic support. It never made sense why I was unhappy there but the moment I moved up to Boston 2 years ago, the unhappiness slipped away. Against the advice of my family, I drove to Boston, found an apartment, and an internship in one weekend, and met the love of my life. This move was all based on the feeling that Boston was the place I needed to be. I fit in well because I could talk to people about quantum physics and current issues, and have people eagerly teach me more than I could possibly understand, rather than think I’m weird.
  4. If one way doesn’t work, don’t linger on the frustration of a broken road. Find a better way.
  5. Study with people who are smarter than you and sit next to the nicest person in class.
  6. A great idea implemented in an effective way will always trump prestige and superficial qualities that seem out of reach for those on the spectrum. Your mind is an asset, and if you use it properly without shame or pride, you can change the world.
  7. The best way to figure out whether someone is manipulating you or helping you is to ask yourself: Do they want something from me? People can only manipulate you if you have something they want. Special educators sometimes neglect the needs of high-functioning autism in order to retain disability funds.
  8. Finding who you are is a continuous journey, not a specific event that happens. It frustrates me how adolescence is deemed a time of searching for identity, because it implies that becoming an adult means you know every aspect of who you are. That’s a bunch of Bologna. I’ve met people of all ages who vary in behavioral patterns and world views. Accept, understand, and utilize your strengths as they are at this moment, and use a growth mindset to improve yourself.
  9. The easiest way to interact with someone who thinks and feel differently then you do is to ask them questions.
  10. In a debate, argument, or conflict, always validate the opposing persons view before stating your own view.
  11. When in doubt, Google. When googling, question the reliability and truth of everything. Look at the people who make claims, and ask yourself if they have a sufficient amount of knowledge to make such a claim. The more proactive you are in your education, the less you have to rely on others for answers. You can find all laws, licenses, addresses, and criminal records within a simple click. This is something you should do in regards to everyone involved in providing accommodations for you such as counselors, doctors, and tutors.
  12. Social media is not a substitute for in person interaction. Social skills like table manners or looking someone in the eye when you shake their hand are invaluable.
  13. Don’t take advice from hypocrites. For example, don’t take relationship and marriage advice from someone whose had 3 marriages end in divorce.
  14. Vaccines do not cause autism. This study was published by a scientist who was jaded by his funding sources, and falsified his data in order to get published. The journal that published his research revoked the paper, and denounced its validity after learning the truth of his research methods.
  15. Firm and non-flexible opinions stunt intellectual growth and stifle your own truth. Research all sides of one issue before deciding for yourself.
  16. Make choices that bring you closer to your goals, not based simply on what you feel. Mastering this habit will help you overcome lethargy, anhedonia, and other symptoms of depression and social anxiety associated with Aspergers.
  17. People are just people. No matter what it may seem, the most seemingly superficial or flawless of individuals have imperfections and insecurities. The success of a person is determined by how they deal with their imperfections and insecurities, not the existence of them. Everyone has their weaknesses, some people are just better at hiding it than others.
  18. The energy you put in will be returned to you. Say positive things to yourself and surround yourself with positive people even if you don’t feel it, because it will make your surroundings positive and supportive to who you are. You might have to boot out some psycho family members or close friends if they are creating more negative emotions than positive, but trust me it’s worth it. Be brave, set those boundaries so you and others can be inspired to improve.
  19. The easiest way to affect an individual’s first impression of you is with make up, hair, clothes,and body posture. Changing facial expression, tone, and word choice take a lot more work. Hair and makeup never came naturally to me and I didn’t start learning how to use them until I went to college. Pinterest has lots of simple tutorials. Because of sensory issues, I only wear makeup for special events.
  20. People are not divided into two categories of “weird” and “normal”. Everyone exists on a spectrum.
  21. Go out of your way to figure out what aspects of yourself you can improve on, and which ones you can’t. Love every part of yourself either way.
  22. There is never any need to be mean. Being nice does not equate to being a pushover and you can always present constructive criticism in a respectful manner.
  23. Keep firm boundaries in the work place. Your personal and private life are better left separate. If you don’t believe me, try bringing up your aunt’s kidney stone as a casual conversation and tell me how it goes.

I send all my love and support to all of you reading this post.
-Alix

Does My Child Have Asperger Syndrome?

Informal Childhood Developmental Checklist

Our son has Asperger Syndrome. To get the diagnosis didn’t come easy and the path to that diagnosis was rocky to say the least. That was over 12 years ago and still, the following checklist we received from our school district is the best heads-up to having Aspergers Syndrome that I’ve seen to date. It cuts to the chase. Though only meant as a ‘checklist’ remember this is not an official document and only mean’t to flag a strong suspicion of Aspergers Syndrome. A doctor or trained therapist would need to make that call, however; if you are looking for a guideline of sorts….it doesn’t get much better or black and white than the form below. It was spot on for us describing our son Sam. We’ve also put it in a downloadable format at the bottom. May it lead you towards illumination! -Jennifer Allen/Aspergers101

Samuel Allen/Aspergers101 Spokesperson

Informal Childhood Developmental Checklist

Social Interactions

Yes      No

____    ____       The child prefers to play alone.

____    ____           The child is rarely invited by others to play in the neighborhood or to participate in activities outside of school.

____    ____           The child’s social interactions and responses are immature, not keeping with his/her age or his/her cognitive abilities in other areas.

____   ____            The child has difficulty interacting in group settings.

____   ____            The child does not play with other children as expected: he/she may not appear interested in their games, or may not know how to join in.

____   ____            The child appears to be vulnerable to teasing, bullying and being taken advantage of by others.

Behavioral Observations

Yes      No

___      ___            The child has difficulty understanding the effect his/her behavior has on others.

___     ____            The child has a significant amount of difficulty taking the perspective of another person, even when it is explained to them.

____   ____            The student has overwhelmingly limited interests in things such as video games, superheroes, cartoon characters.

What to Know When Coworking With Someone With Autism

by: Dave Gentry

Never forget to pump a handshake three times- not one, and definitely not five.Seen from an autistic perspective, the social, shared, and flexible attributes of the modern shared office can be intimidating. As work and life spill into each other, they clash with coping mechanisms for autism spectrum disorder, in which high-level functioning depends on adherence to routine, scripts, and schedules. Despite this challenge, autistic professionals can have precious attributes, and demand better understanding of the relationship between the workplace and this complicated disorder.

“If you’ve met one person with Asperger’s syndrome, then you’ve met one person with Asperger’s syndrome.” In the same circles where this quote is famous, its author is a bit of a celebrity. Dr. Stephen Shore is a professor of Special Education at Adelphi University who has devoted his life to teaching and researching autism. He also has Asperger’s syndrome, a high-functioning subtype of autism spectrum disorder characterized by obsessive interest and poor social skills. “I wouldn’t use the phrase ‘Asperger’s sufferer,’ because some of us enjoy the way our mind works.”

Interview

The symptom affects how people behave, socialize, and communicate, and its acceptance in the workplace is “uneven.” Some employers avoid the issue, others embrace it, and others are seeking out people with ASD because some of their traits make good business sense. While genius is somewhat rare, a common affinity for routines can translate well to the work force. “They can be efficient, and have very low absentee rates.” TV and movies have introduced more savants whose quirky idiosyncrasies suggest autism, but Dr. Shore knows the reality is often different. “It’s all well and good that organizations are seeking IT people, but it’s a low percentage. We’re not all geeks with superpowers in IT.”

Three Necessities for the High Functioning Autistic to Combat Depression

If you are a High Functioning Autistic (HFA), the odds are troublingly high that you also suffer from some form of depression. As someone who suffers from depression myself, I’ve spent a great deal of time thinking about how to find happiness when you struggle with the burdens of having an autistic brain. One possibility for the prevalence of depression in autistic brains is that HFAs, for reasons distinct to their neurological condition, are innately more likely to feel depressed.

My sense, though, is that we tend to be depressed because life is difficult for us in ways that are somewhat different from the experiences of the Neurologically Typical (a satirical term for non-HFAs). As such, any discussion of why HFAs tend to be depressed must be approached as a social justice issue, with a clear statement of ethical axioms that, if followed, would help HFAs and non-HFAs alike.