far from heaven

I’m an Autistic Adult… and I’m in Purgatory

far from heavenI’m 18. I graduated high school last July. I’m “high functioning” enough to be able to take care of my brother and myself when my mom is on night shift on the ambulance. I can dress myself (although not according to society’s “fashion” standards), I keep up with hygiene, sleep and wake on a self-imposed schedule, participate in online communities, cook for myself, help out around the house, and manage my own bank account. No, I haven’t learned how to drive yet. No, I haven’t applied for college. No, I don’t yet have a job but I’m looking for one. It really has to be something quiet and not too overwhelming, though, because there are currently no resources or tools for me to learn how to manage all the challenges I now face in the adult world.

Autism awareness and diagnoses have risen dramatically… for young children. In elementary school my brother had access to all sorts of special accommodations and therapies. Unfortunately, being a girl, I actually didn’t receive a diagnosis until I was 17, because autism presents very differently in girls.

From infancy throughout the schooling years, interventions are readily available. But what happens when you turn 18? Where are the resources? Who teaches us how to interview for jobs? Buy a car without getting ripped off? Balance a checkbook? Pick the right auto insurance? Do taxes? Grocery shop and plan meals? Go on a date? Figure out the best cell phone plan? Find friends?

Society seems to think one magically “grows out of autism” once they reach adulthood, especially if you’re considered “high functioning.” My symptoms are seen as “not really severe” so I don’t qualify for any kind of adult support…

… yet I’m not entirely sure how qualified and ready I am to “adult” right now. Of course my mom works with me on some of these things, I don’t want to make it sound like she’s not parenting me and teaching me about life. But being a young adult with autism, trying to figure out the next steps to life presents with far more struggles than simple social skills deficits.

What is “High Functioning Autism?”

According to LoveToKnow.com, the term high functioning autism, or HFA, is used to describe individuals who meet the criteria for a diagnosis of autism, yet show no cognitive delays, and are able to speak, read, and write, as well as have IQ scores of average or above. Those with HFA do suffer difficulties in communication, language, and social interaction typical of autism, as well as repetitive behaviors and narrow interests associated with the disorder. Abstract language concepts, such as irony and humor may well be beyond the comprehension of adults with high functioning autism.

While with the right support we can manage independent and successful careers, marriages, and social lives, it can still be difficult to blend into the mainstream world. Crowds, even small ones, can activate sensory overload for me and make me shut down. Fluorescent lights, smells, or certain combinations of sounds make my nervous system crawl with pain and discomfort. I have extreme anxiety dealing with the public.

Social awkwardness and communication issues can make me highly misunderstood and even considered rude. Inability to maintain eye contact during conversation can cost a job interview or friendship, as it is often misinterpreted as dishonest or lacking interest. Maybe I pass an interview and secure a decent job, but the challenges don’t stop there. Workplace camaraderie is terra incognita for many high functioning autistic adults. Small talk and sarcastic humor go over my head, and I’ve been known to not have a filter when it comes to appropriate thoughts to verbalize in conversation. Don’t even get me started on not understanding body language or non-verbal cues and facial expressions.

I’ve been accused of being odd, serious, quiet and aloof, when really I’m severely over-analyzing a simple response to “How are you?”

Being high functioning, I often feel that even the autism community discounts my struggles, as my deficits are compared to the hardships faced by the profoundly disabled. So I feel isolated from mainstream society, yet have trouble finding resources for my issues. Less severe symptoms mean I am denied applications for medical and psychological assistance.

I applaud all the awareness and resources put forth in general when it comes to autism, but there is a long road ahead of us still.

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For tips on recognizing adults with autism on the scene of a crime, fire, medical call or disaster, check out this article, Trix Are for Kids, Autism is Not (Only)!

autism and violence

Autism Tips for Emergency Responders: Autism and Violence

autism and violenceI often get asked during my autism trainings for first responders whether or not it is more likely to see someone with autism using drugs and alcohol, specifically when I describe sensory issues and what it’s like to experience them. This often leads to a discussion on autism and violence.

Are autistic people more prone to violence?

When you look at two highly publicized incidents – the 2007 Virginia Tech campus shooting and the 2012 Newtown, Connecticut, school massacre – there is a perception by the public that persons with autism are predisposed to violent behavior. Yet, neither the DSM5 definition of autism nor follow-up studies have ever illustrated an increased prevalence of violent crime among persons with ASD.

So how do you explain violence and offending behavior? Let’s look at separating actual violent crime from aggressive behavior. In autistic individuals, a desire to communicate and/or the inability to recognize personal space might lead to inappropriate touching or pushing. This is never intentional or malevolent behavior, whereas violent crime is typically deliberate, serious, and planned. It involves force or threat of force.

So when looking at a behavior, here are some ways to distinguish a violent criminal behavior from an aggressive autistic behavior.

Autistic Behavior 1: Making no attempt to conceal or justify the behavior.

When someone believes they’ve done nothing wrong, or doesn’t understand why something is not appropriate, they will not try to hide their behavior. In my experience, most people I have worked with on the autism spectrum are 100% honest and incapable of hiding any type of behavior or reason behind it (this makes it very easy to figure out “whodunit” in my household when something is broken or missing!).

Autistic Behavior 2: The behavior is related to the person’s obsession or special interest.

Rigid, restricted and repetitive interests begin in early childhood but do change over time. They also correlate with intelligence level: the higher the level of intelligence, the more sophisticated the level of fixation. These obsessions can “graduate” from Pokémon characters to computers, technology, and scientific experiments, including arson!

Autistic Behavior 3: The behavior is from misreading social cues.

According to an example on CurrentPsychiatry.com, a young man with ASD had been fired a few days after landing his first job selling used cars because he was “sexually harassing” his colleagues. When questioned, he said that he was only trying to be “friendly” and “practicing his social skills.”

Autistic Behavior 4: The offending behavior is a result of a comorbid diagnosis.

Autism can present with several comorbid conditions, such as schizophrenia, ADHD, depression, psychosis or seizure disorder. It is critical to look for an underlying cause. In higher-functioning persons with ASD, violent crime is almost always precipitated by a comorbid psychiatric disorder.

Most people with ASD are neither violent nor criminal. There is a need to educate the criminal justice system regarding the special challenges faced by persons with autism. A defendant with autism has no physical signs of disability and is often misunderstood and mistreated.

What to do when encountering violent behavior and autism is suspected

  • Confirm the ASD diagnosis based on developmental history and any training you have received
  • Screen for comorbid psychiatric and medical disorders, including depression, psychosis, and seizure disorder
  • Carefully examine the circumstances surrounding the offending behavior

During interviews, remember to allow for more time. When you think you’ve done that sufficiently, double it ;) Also try to understand the person’s communication style before asking the critical questions, and remember that lack of eye contact, vague answers and changing the subject can be typical autism behaviors and not evidence of guilt.

 

image courtesy of paals.org

Autism Tips for Emergency Responders: Service Dogs on Scene

image courtesy of paals.org

image courtesy of paals.org

If you have recently attended one of my Autism Training classes for emergency responders, you’ll recall a short video of a woman’s service dog that alerts to self-harm while she is having a meltdown. You can view that video here.

While I included that in my training to illustrate an adult with Asperger’s having a meltdown, someone in class brought up an excellent point: how do you, as a responder, recognize a service dog and what do you do with them on scene?

Project Chance explains that autism assistance dogs are somewhat unique. Unlike a guide dog that helps with physical tasks, autism assistance dogs mainly provide emotional support. They can also help with sensory processing issues by giving their handler a focal point, or a way to ground their sensory input when the environment is overwhelming.

Many autistic children especially have no concept of personal safety and are prone to wandering. A child may be tethered to the dog’s harness or the dog may be trained to alert to potential bolt risks.

Dogs can also be tasked-trained to use touch intervention, as well as pressure intervention and mobility assistance when repetitive or self-injurious behaviors occur.

How is a Service Dog Defined?

According to the Americans with Disabilities Act (ADA), service animals are defined as dogs that are individually trained to do work or perform tasks for people with disabilities. Service animals are working animals, not pets. The work or task a dog has been trained to provide must be directly related to the person’s disability.

Service animals must be allowed to accompany people with disabilities in all areas of a facility where the public is normally allowed to go.

The Ohio Department of Public Safety has a great downloadable trifold with tips for encountering service dogs. Here are some highlights from the brochure.

First and foremost, find out your agency’s policies on service animals! This includes how they define a service animal, information about applicable laws and how to comply with them, what to do if the handler is not in a condition to control the animal, proper movement and transport of the service animal, and veterinary facilities with whom there are established agreements for providing emergent care/boarding for service animals.

Next, you must determine if it is a family pet or a true service animal. The law permits you to ask these two questions only:

  1. Do you need the animal because of a disability?

  2. What tasks related to your disability has the animal been trained to do?

By Federal law, service animals are permitted to go wherever the public is allowed, including your ambulance. If it is not possible to keep a handler and their animal together (e.g., the handlers’ medical condition warrants transport by air or prevents the handler from controlling the animal) make sure a responsible party or someone with the handler’s permission can transport the animal safely and reunite them with their handler as soon as possible.

If the dog is being transported with the patient, load the dog last and unload it first, as this minimizes risk of injuring the animal and gives you needed space for maneuvering equipment.

If you must handle the dog, use the leash, not its harness. Use the side door of the ambulance for loading and unloading the animal; avoid open diamond plate gratings as they may injure the dog’s paws. If you need to lift the dog, put one arm behind the back legs, the other in front of the chest and gently lift. Offer to get food and any other supplies the dog may need before transporting.

Overall, try to accommodate the dog as you would a child alone with the patient. Take the dog with you and if the handler is unable to care for the dog at the hospital, attempt to notify a caretaker known to the handler for the dog, if possible.

You can download the entire helpful brochure here.

Have you encountered service dogs on scene? How did it go? Share your comments below!