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.”

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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;
  • cognitive rigidity;
  • interests or behavior labeled ‘odd’;
  • and hypersensitivity.

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.

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Over the years one question is always asked at the end of every autism workshop Sam and I have been privileged to present. To paraphrase, it goes like this:

The Question:

“Sam this question is for you. We just found out our teenage son has (this part she whispers) Autism. I am unsure whether to tell him, his siblings or anyone else for that matter. What are your thoughts…should we tell?”

Since the question is directed at Sam…all eyes are on him waiting his response. For this reference, the woman asking the question is a composite of all the mothers who’ve asked this of Sam more times than I can count. She stands with tears in her eyes and is truly grappling with the recent diagnosis of Autism yet has hope after hearing Sam talk about growing up on the spectrum. She relates, she hurts and she hopes. So answering this common question takes thought. Samuels response is why I am writing this post. It comes straight from the heart of a young man who understands what autism ‘feels’ like. He is able to offer an insight, perhaps, into her own sons inner workings, workings that the parent has yet to grasp.

So when Sam, on his own, offered up his opinion it seemed appropriate to share with you now as it always seems to sooth the inquiring Moms fears.

The Response:

“Why would you not tell your son of his diagnosis? Believe me, he knows he is wired differently. He already knows he is not like his peers and probably feels like an outcast. It might even be a relief to know he has autism as there will finally be an explanation for most everything he is experiencing such as frustration, social loss and even physical pain. At the very least, he (and you) can begin to face the challenges through treatment(s). The diagnosis of autism isn’t a death sentence. It’s a road map of the brain. Understand the brain and map out a direction. Don’t think of Autism as a weight…think of it as a pair of wings in which to fly. ”

Inevitably, the Mom appears relieved and hugs Sam as if to thank him for permission to let the word, Autism, come into their lives. I know because we started from the same place.

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Our son has Aspergers Syndrome. However, getting the diagnosis didn’t come easy and the path to that diagnosis was rocky to say the least. That was over 10 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.

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The following is only meant as a ‘checklist’. Remember, this is not an official document, and is only meant to act as a flag for a strong suspicion of Aspergers Syndrome, a doctor or trained therapist would need to make the official diagnosis.

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

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Going through the Kinder through third grade for my Aspergers son was by far our (and his) most difficult time. A perfect storm comes together for the parent, the teacher and especially the undiagnosed child on the higher end of the autism spectrum when beginning the school age years.

Kindergarten teacher reading to children in library

Often thrust into a social situation where no one has a clue that autism even exists can easily mask itself as bad behavior. This crucial window of time has been my inspiration to create Aspergers101 so that you can have more information at your fingertips than we did! The signs could come earlier if your child is in day-care or daily with other children. Although our son (who was our first) did show early signs…it didn’t become ‘in our face’ until he started public school.

Remember, your child cannot tell you that the ringing of the class bell hurts their ears like an icepick to the brain as it starts off the day (as it does every class period). Nor that the polyester in their clothes hurts their skin. At this age they just ‘act out’ when they’ve had enough.

The teacher sees this as a potentially problematic child, and the parent becomes frustrated by not knowing why all this is happening now that they are at school. This is when the perfect storm can happen. You’ve got teacher, parent and student colliding, often treating ‘bad behavior’ verses the real cause which is autism.

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Your Child's diagnosis, becoming an expert

The community I was from is set up for autistic people, people like me, to fail. One of the big issues in a minority community is that mental health is not addressed and no one believes in it. The resources are usually not available or difficult to find for people in minority communities. There are also long-standing traditions of mental health denial because of a “pull yourself up by your bootstraps” mentality. Because minority communities have often faced severe oppression and suffering in many ways, they have built an ideology about being strong and not helpless or weak. This has had many adverse effects on the mental wellbeing of the people within those communities.

Your Child's diagnosis, becoming an expert

Since mental health was somewhat of a myth to the community, it was a struggle I endured in my entire life.

I’m an African American male who comes from a community where if you displayed behavior that is associated with a mental illness, you were punished. African American communities often believe strongly in going to church, and they will tell you to pray about it and not seek help from a mental health professional. If you seek help from a mental health professional, you are viewed as weak. They tell your child to “man up, it’s all in your head, you’re making it up, etc.”

It’s hard to accept a mental health diagnosis in the Black community because of traditions we have been taught with.

Nobody in my community accepted my autism diagnosis, and I was ridiculed for seeking help. It was not until I was 22 years old, when I had my third suicide attempt, that I received help and support for my autism and other disabilities.

Today, to help others avoid this struggle, I have composed a list of ways you can accept your child’s diagnosis no matter how severe it is. Remember, you can be victorious and become an expert and advocate for your child.

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As most teens and adults with Asperger syndrome know, people with Asperger syndrome can be significantly depressed. The rates of diagnoses of depression vary among studies, from 18% to 22%. The most commonly quoted rate of a depression in the general population of the US  is 6.7%. Most of the research shows both genders have these high rates of depression.

Studies focused on males and females and not those who are transgender. There are more people who identify as transgender in the AS population than in the general population and transgender people have a higher rate of depression. One would guess that someone who is both AS and transgender might have a high tendency towards depression.

Interestingly, non-autistic full siblings and half-siblings of individuals with ASD (not just Asperger syndrome) also had higher rates of depression than the general population, although at half the rate of those with ASD. Studies of suicide attempts are also very troubling. In studies of suicide, the rate of suicidal thoughts and attempts are prevalent, especially in adolescence and young adulthood.

It’s critical to identify depression, since it can be treated.

It’s obviously important to understand why rates of depression and suicidal thoughts are so high. One factor, given the findings in siblings, is that there is an increased genetic vulnerability to depression, although large studies haven’t supported a common genetic overlap. We have to look to other factors to account for these high rates of depression.

It’s important to diagnose clinical depression for anyone for a simple reason – depression is treatable with a variety of modalities:

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The summer of 2017 Aspergers101 hosted a free informational series on Aspergers at the San Antonio Public Library. We have recorded each of these valuable sessions in video and powerpoint format so that you can have access to them at any time. Below, watch the first workshop from our Informational Summer Series on Aspergers focusing on diagnosis in childhood. First, Jennifer and Sam Allen discuss the initial steps of recognizing signs of Autism in a child and seeking a diagnosis. Next, Berenice de la Cruz, Ph.D., BCBA-D and COO of Autism Community Network, gives details on the diagnosis process and the medical terminology behind Autism and Aspergers.

The following checklist for Autism and Asperger behavioral signs comes from Jennifer and Sam’s powerpoint. This checklist is not meant to be used as a professional or standalone diagnosis, but rather as a helpful guide that can support you in your journey of diagnosis for your child.

Informal Childhood Developmental Checklist

Social Interactions

 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

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Interdisciplinary Autism Assessments at ACN

For individuals on the autism spectrum, a diagnosis from a medical professional is necessary in order to qualify for medical services. One main difference in the assessment is in how the child is evaluated and whether the evaluation is done by an individual or a team.

Interdisciplinary Autism Assessments at ACN

At ACN, we conduct interdisciplinary autism assessments where a number of specialists participate in the evaluation and all of them are present at the same time from start to end.

The team consists of a developmental pediatrician or psychologist, a behavior analyst, a speech-language pathologist, and an occupational therapist. We believe that a comprehensive evaluation gives parents a clearer sense of the skills and deficits in their child and a clearer direction for seeking therapies.

The following is an illustration of the pathway to a diagnosis at ACN:Continue Reading

Q&A with Lisa Rogers

Q: Dear Lisa,

We think our daughter has Asperger’s. It’s all only her way and she bursts out laughing at very awkward times. She has no friends and doesn’t’ seem to care about her hygiene or people skills. I’m not sure where to go or what to do. We live in a rural area in Tennessee. Does the school or doctor’s office help? I’m reading online and found aspergers101 and it seems the closest to finding what is wrong.

-Mary Andrews, Greenbrier Tennessee

A: Dear Mary,

While I live in Texas, there are some federal guidelines that mandate certain functions at the state level that should provide some guidance to you and your family. Go to the following link for some initial information:Continue Reading

Autism is real and like many others with the diagnosis, my son, Alex Hale, is succeeding in life on the Spectrum. His two songs “Into the Light” and “Walk a Mile” share his thoughts and emotions on the journey of an Autistic Individual, and assert that there is light at the end of the tunnel. It has been a long journey since his official diagnosis at the age of 6 years old.

There were signs of awkward behaviors, however his pediatrician initially suggested that we didn’t look for “trouble”. Once diagnosed we were in a state of awe rather than shock. We had assumed he would be diagnosed with ADHD or something of that nature. Immediately Alex’s dad and I started asking questions, reading up on Autism/Aspergers and looking for answers and methods to keep Alex mainstream.

Alex is high – functioning and as he says in his advocacy speaking engagements, you may not guess by looking at him, or meeting him initially, but spend a little bit of time with him and you will see that his social skills are a little different.

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11012954_10204462766751207_2317137543922936014_nI’m pretty sure those of you who have discovered that your child has high-functioning autism went into some kind of state of shock when you found out about the diagnosis. My own mother felt the room spinning when they suggested the possibility of me having high-functioning autism.

But, at the same time, she also experienced a feeling of relief for finally having a diagnosis that explained the foreign behaviors.

It’s okay to feel shocked when the diagnosis comes in. It can be a lot to take in, but I can assure you that there is nothing to worry about. In fact, I’d consider the diagnosis to be a stepping stone towards a journey.

Now, some of you may be worried after getting the diagnosis that your child may not be able to drive, or to find a romantic love interest. Take a look at me; I have Aspergers and I’m driving to and from college every Monday through Thursday with no hitch, and I’ve even had some girlfriends in recent times.

Of course, there are going to be rough patches throughout the journey, but that’s what makes the journey all the more interesting. Because, let’s face it, normal is boring.

In conclusion, there’s no need to treat the diagnosis as a lethal disease, and I see no reason for the child not to know about their high-functioning autism. Take the time to explain what it is, and make sure they understand that high-functioning autism is far from anything even close to a disease.

By Samuel Allen