Tag Archives: autism diagnosis

autism boys club

Autism is Not a Boys’ Club

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autism boys club

In Georgia, the statistics are cited as 1 in 39 boys and 1 in 181 girls have been diagnosed with autism. It is said boys are five times more likely to be autistic than girls. These numbers are in my Autism Training for Emergency Responders class.

After my daughter received an autism diagnosis at age 17, I started digging deeper and realizing that it’s not necessarily the case that less females are autistic, but that many are flying under the radar altogether.

Autistic girls are often regarded as “eccentric” or “quirky,” may be misdiagnosed, or only partially diagnosed. There are so many stories of women finally received an autism or Asperger’s diagnosis in their 30s and 40s, and how relieved they are to find they’re not “defective” after all.

It Hit Home for Us

For my daughter, it truly put the last piece of the puzzle together for us. Things she struggled with unexplainably, such as anxieties and fears, strange rituals, and extreme resistance to change, now made sense. My daughter writes,

“My diagnosis was like a lifeline. It made me feel not alone, and it made me see that I wasn’t broken. For a lot of my life I felt like an alien, I felt like I didn’t really belong anywhere. Knowing I am autistic helped me stop beating myself up over everyday behaviors and I began to accept myself – quirks and all.”

Much of the early research into autism was based on data from boys. When Hans Asperger first defined autistic psychopathy in 1944, it referred only to boys; he believed no women or girls were affected by the condition. Even the current DSM questionnaires are geared toward standard autistic behaviors in boys.

Girls are more likely to engage in “social camouflage” behaviors – like hanging out in groups, mimicking facial expressions, or showing signs of empathy – that mask many of the classic “male” signs of autism. Repetitive or obsessive acts, like collecting things or having intense interests, are seen more as unique quirks than as anti-social behaviors. They may even be quickly labeled as OCD or Anxiety, rather than seeing autism as a root cause.

Clinically Speaking…

Does it make sense that autism presents so differently in females? Think about it. Gender roles aside, the diagnostic criteria for autism is problematic. According to Scientific American, it’s based solely on data acquired from studies of boys.

Those in the medical field recognize that a heart attack presents very differently in women. Women can experience a heart attack without any chest pain or pressure; instead they may experience:

  • Shortness of breath
  • Pressure or pain in the lower chest or upper abdomen
  • Dizziness, lightheadedness or fainting
  • Upper back pressure
  • Extreme fatigue

Why is it so questionable to have something as significant as autism spectrum disorder also present differently?

Resource Gaps Galore

The absence of resources for my adult daughter with autism is due to a trifecta of issues:

  1. Despite autism being a neurological condition, it is still viewed as a mental health issue by many professionals
  2. Females are often misdiagnosed or overlooked altogether
  3. Once a child is no longer in school the resources dry up, creating an unacceptable gap in services for autistic adults

Reducing the gender gap in diagnoses is a start; it is critically important to make sure that females have the same access to resources and care that their male counterparts do.

image courtesy of freedigitalphotos.net

1 in 45 Children Now Diagnosed with Autism: Should We Be Worried?

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image courtesy of freedigitalphotos.net

image courtesy of freedigitalphotos.net

It’s time to update my website, brochures and training materials again… according to the latest numbers released from the CDC this past Friday (the 13th!), 1 in 45 children in the United States has an autism spectrum disorder.

According to livescience.com, this new report is based on data collected during the yearly National Health Interview Survey, from interviews of parents about their children.

The CDC’s previous estimate (yes, I said estimate) put the rate at 1 in 68 children. Though this looks like another significant increase in a short amount of time, there are some other factors at play.

There is an increase in autism awareness now among parents and healthcare providers that was lacking in past years. Some kids were automatically labeled as having a developmental disability rather than being diagnosed with autism. There have also been recent changes in the diagnostic criteria and symptoms used to describe ASD.

As an autism diagnosis is becoming less and less of a stigma in our society and there has been an exponential increase in services and support, doctors are being more thorough and less likely to “under-diagnose.”

In this latest study, the way data was collected has also changed, which may play a role in the increased numbers. Putting the question about autism second in the parent surveys, before the question about other developmental delays, resulted in the data showing a higher prevalence rate for ASD and a lower prevalence rate for other developmental delays. The opposite seemed to occur in 2011 to 2013, when the questions were the other way around.

Though there is somewhat of a divide in the public opinion of increased number – broader diagnostic criteria versus food and environmental factors – most experts feel these latest results are probably a more accurate measurement of the true prevalence of autism.

My question is, are we even taking into account how many PARENTS are now getting a diagnosis of autism after their child’s diagnosis? I have seen this so much – parents who thought they were simply “quirky” or had other diagnoses are now putting the puzzle together for themselves and finding great relief in better understanding their sensitivities, thought processes and social struggles. What about all the females with autism that are either diagnosed in their late teens/early 20s or NOT AT ALL because their behaviors don’t fall under the “classic” signs of autism typically seen in males?

My guess is there are a lot of awesome NEURODIVERSE individuals walking around that have an autism spectrum disorder – our specialists, our innovative thinkers – that are changing the way our world works.

My favorite blog post from Stark Raving Mad Mommy is called “Little Specks of Autism.” She says, “More and more, I see it in myself, my family, strangers. Not full-blown autism; not something that hampers life to the point of needing intervention. Just specks of autism. Our anxiety, our OCD, our sensory issues, our weird selective hearing issues are all little specks of autism.”

Should the 1 in 45 worry us?

I don’t think it’s even important, honestly. As emergency responders, here’s what is:

  • Is your patient/victim/(even) perp having an overwhelming sensory response to his or her environment?
  • Are they experiencing communication difficulties?
  • Are they unable to look you in the eye when you’re speaking to them?
  • Can they process and understand exactly what you are asking of them or telling them?

If the answer is no to any of these, the next step should not be to fine-tune a diagnosis but to treat the person. We can try to recognize a challenging behavior not as someone who’s giving us a hard time, but someone who’s having a hard time. Whenever possible, using the methods I teach in my autism training, we can adapt or modify our response if it makes sense and the scene is safe for all involved.

image courtesy of freedigitalphotos.net

Weekly Autism Tips for Emergency Responders: Co-existing Conditions

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image courtesy of freedigitalphotos.net

image courtesy of freedigitalphotos.net

Children with an autism diagnosis often have more concurrent medical and psychological or mental health conditions than their non-autistic counterparts. Because of this, they are also more likely to use EMS and healthcare services.

Learning to recognize the signs and behaviors of autism in a patient can be challenging enough; adding medical complications to the mix can further complicate the call. Approximately one third of patients with an Autism Spectrum Disorder (ASD) have seizures.

According to a guest post on AutismSpeaks.org by epidemiologist Laura Schieve, Ph.D., at the Centers for Disease Control and Prevention, her study concluded that children with autism, ADHD or other developmental delays were:

  • 8 times more likely than children without developmental disabilities to have ever had an asthma diagnosis,

    6 times more likely to have had eczema or a skin allergy during the past year,

    8 times more likely to have had a food allergy during the past year,

    2 times more likely to have had frequent severe headaches or migraines during the past year, and

    5 times more likely to have had frequent diarrhea or colitis during the past year.

    Children with autism were twice as likely as children with ADHD or other delays to have had frequent diarrhea or colitis during the past year and were seven times more likely to have experienced these gastrointestinal problems than were children without any developmental disability.

Other co-existing conditions commonly found with autism are tic disorders, like Tourette Syndrome, Attention-deficit-hyperactivity-disorder (ADHD), Obsessive/compulsive disorder (OCD), sleep disorders and mood disorders.

Obesity is another common issue, mostly due to poor trunk development, picky eating habits and decreased physical activity.

Medications, Pain Management and Field Impression

When in the field, be aware that standard dosages of medication for pain control may be ineffective for patients with autism. Be careful when relying on “outcome-based” pain management, as higher dosing may result in unintentional overdose.

Your patient with autism may also exhibit uncommon side effects or adverse reactions to routine drugs, and they may be on uncommon medications that may have interaction with drugs given in the pre-hospital setting.

Remember that it is not your job to diagnose an autism spectrum disorder or try to differentiate it from other conditions. The goal of learning to identify autism is solely to form a working impression that will help you use more appropriate assessment and treatment strategies. As always, you should treat the patient, not the diagnosis.

You should also always consider that there is a medical reason for the behavior, as stroke, brain injury, seizures and hypoglycemia may present with similar signs and behaviors. DO NOT IGNORE LIFE-THREATS just because your patient has autism or you suspect they do.