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Larger student classroom populations in some areas, inadequate wages, resources, and benefits for educators in many US States, and the added challenge of rising numbers of neurodiverse children compromise education as a whole for all of our children. Reach out when you can. Be Kind, Be Patient, and advocate for all children in less than optimal classroom situations. Government has a much bigger role to play here...don’t you think?
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There are both genetic and non-genetic influences along with environmental factors that are thought to be involved in the development of autism, but, none of them is clearly understood.
To review the incidence of Autism in 2018: 1:59 in the US (CDC) and 1:66 in Canada (Autism Speaks).
-if you have one child with ASD, there is a 2-18% chance of having a second child affected.
-among twins, studies have shown the there is a 36-95% chance that both will be affected.
-1.5% of children in the general population are affected (National Institute of Health, May 2020)
and 3.5% for children whose parents have a sib with Autism... if the mother has a sib who is affected, it is not significantly more likely to have an ASD affected child. But if the father
has a sib with Autism, it is significantly more likely.
-there is a 3x greater prevalence for males to be affected and reasons are unknown.
-Autism can change with age and can improve. 30% of young children have less severe symptoms at 6 years of age than at 3.
-many with Autism and ASD are able to live relatively normal lives. Most teens and adults show improvement overtime. Many remain stable and some get worse.
-there are known gene changes associated with ASD and people with these gene changes are at increased risk of developing the condition.
-a large study in 2019 involving 2 million people across 5 countries finds that ASD is 80% reliant
on inherited genes. Therefore environmental causes are responsible for just 20% of the risk.
At least 30% of these genes that increase risk are spontaneous ne novo mutations....meaning
that they mutate in the individual sperm or egg for no known reason.
I found it fascinating that in our pediatric practice in Roswell, NM, with a population of about 15000 patients, we had a very low incidence of Autism overall in the first decade of this century. About 70-75 % of our practice was Hispanic. At that time the non-Hispanic whites had a much higher incidence than Hispanics or Blacks. However this is rapidly changing. The 1 in 59 rate in the general US population in 2018 was an overall 15% increase from the previous 2 years, largely due to better outreach and diagnosis in the minority populations. But minority rates are now exceeding white rates, especially among Blacks, and Hispanics are paralleling Whites, implying that there are differences in risk factors (either greater exposure to environmental influences, or perhaps another trigger.). I'll have to follow this one.
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I mentioned earlier that diagnosis is not easy because there are no blood tests or simple medical procedures. Diagnosis depends on a broad but specific group of symptoms and requires direct observation combined with expert examination and assessment, as well as input from parents, teachers, and other caregivers. Autism symptoms exist across a spectrum and must be differentiated from other developmental disorders or mental health issues.
Autism Speaks' Autism Treatment Network or Autism Speaks Resource Guide are available to help anyone find services in their area, both in Canada and the US.
Ideally, on the assessment team there should be a developmental pediatrician, psychiatrist, or neurologist; a psychologist with autism expertise; a speech and language pathologist; and an Occupational Therapist. A physical exam should focus on possible medical or genetic issues that could be associated with symptoms. A psychologist can administer developmental and cognitive tests. Communication and social skills are typically evaluated by a Speech and Language Pathologist. Occupational Therapist can assess sensory and motor problems.
In an earlier blog, I discussed symptoms that developed most commonly in the 12-18 month age group, but there are signs of possible EARLY Autism. And these are:
-by 6 months of age, no social smiles or other warm or joyful expressions directed at people
-by 6 months limited or no eye contact
-by 9 months no sharing of vocal sounds, smiles, other non-verbal communication
-by 12 months no babbling
-by 12 months no use of gestures (pointing, waving, reaching)
-by 12 months no response when name is called
-by 16 months no words
-by 24 months no meaningful 2 word phrases
-by 24 months, any loss of previously acquired speech, babbling, or social skills
Pediatricians and Family Physicians usually screen for Autism at the 18 and 24 month Well Child Checkups. This screening tool/questionnaire is an MCHAT-R. Modified Checklist for Autism in Toddlers -revised. However, screening can be requested ANYTIME from your physician or any early intervention program. The MCHAT can also be accessed on line, filled out at home, and taken to your doctor.
If developmental delays or learning challenges are identified, you don't need a diagnosis of Autism to access early intervention services. START ASAP. For example, with language delay, the earlier the intervention, the better the outcome, generally speaking that it. Ignore the "he/she will grow out of it" advice!! Get on it!
Some genetic stuff coming up...and it's confusing...but interesting!
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STIMMING = self stimulation. Examples: hand flapping, rocking, spinning, stacking things or lining things up repetitively, head slapping, repetition of words or phrases. Stimming is almost always a symptom of Autism, and it constitutes one of two diagnostic criteria that define Autism. Having said that, you may be interested to know that subtler forms of stimming are also part of most people's behaviour: tapping a pencil, nail biting, twirling your hair, tapping toes. But these are different in the type, quality and obviousness.
People with autism may 'stim' for all sorts of reasons: because they are feeling uncomfortable, excited, anxious, happy, or overwhelmed. And they may 'stim' for long periods. Stimming is thought to be a tool for self-regulation or self-calming. It is how they manage strong emotions such as fear, anger, anxiety, excitement, anticipation, or how they handle overwhelming sensory input (too much noise, heat, light, food, etc). Any of these things can pop up in normal daily living in spite of all good intentions.
Stimming can be useful in managing challenging situations but when it becomes a distraction, or when it creates a social problem or causes physical harm to self or others, it can get in the way of daily life. There is a very negative side to stimming because if this behaviour is constant, it interferes with their ability to interact with others, or to even have them included in typical classroom, community, or employment situations. It can be a big distraction for others but it can also be upsetting or frightening in some cases: pacing the floor, slapping himself/herself in the head. When this happens, autistic children and adults are often marginalized.
To manage these situations, changes can be implemented: for example, smaller classes, quieter settings, clearer expectations. Occupational therapy may be helpful, such as squeezing a stress ball instead of flapping or slapping, and sometimes, medication is helpful.
Stimming is rarely dangerous but can be embarrassing for parents and sibs, disconcerting for teachers, and off-putting for potential friends. Although it may be possible to reduce or redirect stimming, it may be impossible to eliminate it. Parents and caregivers who have difficulty dealing with the realities of Autism in the family may need professional counselling to manage feelings and frustrations.
Early diagnosis is critical because early intervention and management can be life altering.
Stay tuned for further discussions. And please share your experiences
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With the prevalence of Autism being what it is, undoubtedly most, if not all of you, have known or know families with affected children. They will tell you that in the first year of the child’s life there was little or no indication that something was awry. Major symptoms tend to appear around 12-18 months though they can appear earlier. I will list the symptoms as delineated on the Autismspeaks.com website.
-not responding to name by 12 months
-preferring not to be held or cuddled
-not following instructions
-loss of skills ie: no longer saying works that he/she could previously say
-difficulty explaining what they want or need
-difficulty understanding how other people feel
-avoiding eye contact
-difficulty adapting to changes in routine
-being unusually attached to toys or objects
-rocking from side to side
-spending a lot of time ‘organizing’ items ie: stacking or lining things up repeatedly
-repeating certain words, phrases, sounds
-having an unusual response to certain smells, tastes, sounds
-movement problems, including balance impairments, fine and gross motor skills
Autism occurs less frequently in girls and may be overlooked for a long time. Girls tend to be naturally quieter and more content to play alone. They are good at hiding their symptoms and put more energy into fitting in. They make friends more easily than boys. Mental health issues such as depression, anxiety and personality disorder can occur alongside Autism and can result in misdiagnosis. The stress of Autism can result in self-harm behaviours in girls which may go unnoticed for a while, whereas boys tend to act outwardly with anger or misbehaviours, raising a red flag. Anger is not usual in ASD, but rage can come on suddenly and disappear just as quickly. It can be triggered by stress, sensory overload, changes in routine, and being ignored.
ASD children are universally vulnerable to bullying and abuse. Parents, caretakers, and teachers should be aware of this and educate other children on the condition and how to support and protect affected individuals.
Enough to think about for today. Feel free to comment and share your information and experiences.
Next time we’ll talk about ‘STIMMING’
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When I was graduating from medical school in 1982 (in that last century!!) and beginning a 4 year residency in pediatrics, the incidence of autism was 4:10,000. In the 1990’s, that changed from 1:2500 to 1:1000 over the decade. The incidence has risen steadily since they began tracking in 2000, sparking fears of an Autism epidemic but this increase stems from two things: a growing awareness about Autism, and changes to the diagnostic criteria. In 2013 the American Psychiatric Association merged 4 previously distinct diagnoses under the umbrella of Autism Spectrum Disorder (ASD): Autistic Disorder (the most severe form), Childhood Disintegrative Disorder, Pervasive Developmental Delay-NOS (not otherwise specified), and Asperger Syndrome (the mildest variant). ASD is often referred to as being “on the spectrum”, a phrase we have all heard or used.
Autismspeaks.com states “Autism, or Autism Spectrum Disorder, refers to a range of conditions characterized by challenges with social skills, repetitive behaviours, speech and non-verbal communication, as well as unique strengths and differences.”
In 2018 the National Autism Spectrum Disorder Surveillance System notes that 1:66 children in Canada are affected (1:59 per the CDC in the US). 1:42 boys 1:189 girls.
Why boys are affected significantly more often that girls is poorly understood.
The causes of Autism are not clear but are thought to be due to genetic, non-genetic, and environmental influences. Let me be clear: VACCINES PLAY NO PART IN THE DEVELOPMENT OF AUTISM. All evidence to the contrary has been disproven/debunked to date.
I was disturbed to read that 50,000 teens transition each year into the adult world and lose their school based services. I will find out more later about what is available to them in adult life in Canada.
ASD presents diagnostic challenges. There are no blood tests or simple medical tests. Diagnosticians look for a broad but specific group of symptoms, and this requires direct observation combined with an expert exam and assessment. Reports from parents, teachers, and other caregivers play an important role also.
This is a lot of information to process so I will continue in a few days.
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You might be interested to know that this little story came about following a true life event. My grandson Greyson, who has autism, was about 3 at the time. My daughter came home from work late one evening and called me saying “Guess what I found by the front door”. Apparently she found Greyson’s little shoes wrapped in duct tape. She asked her husband whether she should expect to find Greyson duct taped to his crib. He just laughed and said “Well, he wouldn’t leave his shoes on outside so I taped them on”.
I was quite amused and sat down at the computer, and immediately, out poured this story, embellished of course. Greyson is now 15 and loved unconditionally.
Our family has learned much from Greyson’s disability. Life has been a big challenge for him, for his family, especially his younger brother, and also for his peers. Greyson’s endearing personality has certainly enriched our lives and the lives of his peers. I hope to share information in this Blog about this disorder to increase awareness about Autism and its impact on the child, the family, and the community. There is much we can do as individuals and as a society to diminish their challenges and to help these individuals integrate as they mature to become the best that they can be. But first we must have knowledge.