REPRINT FROM SEPTEMBER 2011: Please note: All questions are asked by a Binghamton University (SUNY) Nurse Practitioner Student
NP Student: What are your perceptions about autism, In terms of how it originated in children?
Sally: It is believed to be a neurobiological disorder, that is, that there is a variety of reasons for the onset. Either there is autism that appeared from birth on and when a family looks back they can usually see it in videos of their child and then perhaps the environment triggered it to a more severe form or there is the regressive type of autism where the child was talking and developing normally and then suddenly halted and began to regress. Generally, our belief is that there is something genetic being triggered by an environmental toxin.
NP Student: How can health care providers be more open and welcoming to these children and their family?
: By learning
the peculiarities - for instance, my son would shriek, kick and scream and
fight whenever we pulled into the parking lot for the doctor's office. He had
experienced many ear infections and not great experiences. He would
scream the entire time. I would try to tell the doctors back when my son
was only 9 months old, even back in 1993, that my son had autism. That
this was not normal. So doctors and practitioners need to listen to the
parent. If the child is a difficult patient, then perhaps schedule the
visit for a time when the office is less busy. Absolutely no waiting can
be tolerated. This is the worst thing to do for a patient with
autism. Listen and be tolerant of the parent's requests. If you
suspect autism, also test for immune system and GI tract disorders.
NP Student: How can we make them feel safe during check-ups in our clinic?
that after you do something, for example a weight, height and then temperature
- you need to do that every time and in that order. The child with autism
has an extremely good memory and needs to have these done in the same
order. The mother needs to know that you are trusting her
instincts. The child needs to know that you are serious about
medicine - meaning if you want to check the ears, then get down to business and
don't use a lot of words and don't spend a lot of time trying to talk them
"into it". Just say "I'm going to look in your ears with
this light" and then do it. A child with ASD needs to know the
exact names of things. My son knew that it was called an otoscope and
that they were eustachian tubes, but he needed to be respected for his knowledge
and so did the mother who spent a lot of time trying to learn all she can about
NP Student: What resources would you recommend to these parents who need answers?
two really great resources - one is the Autism Research Institute and the other
is of course, this website. There's now almost too much information
out there and so by writing these articles and posting information, I can help
point the parent or teacher where they need to go so they don't waste precious
time or get overwhelmed.
NP Student: How do you differentiate between delayed development and/or behavioral problems and Autism?
: Delayed development is just that... delayed but
the key is that even though it's delayed, it's EVENLY delayed. With autism,
there is uneven development. For example, my son (again as an example)
could sit up and feed himself a Zwieback cracker/toast but never rolled
over. He could tell you the word "off" when you turned off a
light at the age of 10 months, but couldn't mimic you when you kissed or
something like that.
NP Student: Are there any tools or diagnostic tests that aid in diagnosing Autism that will help providers with early diagnosis?
Sally: The CARS - Child Autism Rating Scale - Has a version that's quick for docs to do as a prescreen when the child is 18 months and then there's the ADOS Autism Diagnosis Observation Scale.
NP Student: What is the
next step after diagnosis for the A) family B) child and C) health care
Sally: A. To grieve a bit and let the feelings and emotions be there and be real. Don't deny them. Make the anger work for you by finding the way to reach your child. You need to act fast, but not overnight. It's a process. Connect with other parents. Call your school district if the child is over 3 and your health department if they are under 3 to get services going.
needs to still be as accepted as the child you had the hour before you found
out. In other words, it's still the same child that was there all
along. Disclosure and framing of autism in a positive way to your child
is essential. Don't be caught down the road when they are older trying to
explain autism to them. Be honest at the beginning.
Be there with resources that are listed
on this website, Examiner. Don't discount or make light of
the disorder. Connect them with other families and respect whatever
therapy or treatment they would like to seek out. If you don't provide
that treatment, then refer them to someone who does. As long as it is not
a harmful, invasive form of treatment, all forms of therapy and treatment
should be considered. It's an individualized disorder. No two children
are alike and so no two children with autism are alike.
REPRINT FROM AUGUST 2014:
What's unfolded over the past few days will impact children, parents, and individuals diagnosed with autism quite possibly harder than the first day the words "Your child has autism" ever could. The effects are already being seen in the homes, schools and now the community as the first age group with autism graduates. It is said that each person with autism will need over 3.1 million dollars in a lifetime to live with adequate support and care.
This week it was announced that the CDC may have altered studies claiming there is no link between autism and MMR vaccines. Thanks to a whistleblower who came forward this week with his identity - William Thompson, PhD. Dr. Williams has first-hand knowledge of the alleged cover-up.
From the Autism Action Network's John Gilmore, "For those of you who haven’t heard the news, William Thompson, Ph. D., a senior research scientist at the Centers for Disease Control and Prevention (CDC) has provided information to several sources alleging that he and his colleagues, who are all senior people at the CDC, altered a 2004 study to cover-up the finding that African-American male toddlers who received the Measles Mumps Rubella (MMR) shot under the age of 36 months had 340% more autism than those who got the MMR older than 36 months. The alteration to the study was allegedly done to hide the relationship between the MMR and autism. Even after the alleged deception, the study still showed that children who received the MMR at a younger age had a higher autism rate than those who received it later in life. Yet the study was marketed as showing no affect. "
A connection may not yet be made by some of the parents who are 'new to the autism scene', to all of these findings, studies and even the reason behind why some non-profits were formed to begin with. Autism is a complex disorder that should be considered neurobiological, not mental, in its origin. These 'newly diagnosed' parents too will read and be sickened, angered and then hopefully will go into action and join the parents who have been saying all along, "This is real and we need to be heard".
It seems autism may even trump race. The rate increase in autism is so high in this country that even the rate increase in this covered-up study is not the highest increased rate. It's an issue that goes across all races, religion, nationalities and economic lines. When you have an increased rate dating back as far as 1995 showing an approximate increase of at least 900% in the rate of autism diagnoses in children aged 8 and up, it was only a matter of time before these rates would be illustrated throughout the country...and the world. But know this - these studies of the rates were published by the CDC itself and there are alleged cover-ups from the start of these autism rate studies. So now, there's a cover-up of an even higher rate? It's damage that can't be undone.
The next few days and weeks will hopefully unfold the next chapter in this long, unnecessary journey that parents of children with autism must travel. Stay tuned...
If you really want to empathize and serve those with
disabilities, you need to be respectful of the language used when referring to
them. Actually, don’t “refer” to "them" at
all. That means, no workshops on how
best to “serve” them, no workshops on how best to “emphathize with them” and no third-person references. And certainly not through
Empathy Mapping, which has been found to be MORE harmful to those with
disabilities than it has been proven to be helpful. This Empathy Mapping technique has been
taught in social work schools for decades and needs to stop. Do you really know what it is like to have a
developmental disability? Here’s a new
concept…invite someone who has self-identified their developmental disability (known as a self-advocate) to be at the workshop, meeting, or the planning session.
There is nothing more condescending, patronizing and downright offensive than to see a group a people sitting around a paper chart with colored markers working in groups saying how they are going to “Help” those with disabilities and those who receive Medicaid. Just stop now. Instead, learn how to do person-centered planning. Real person-centered planning. That’s the true meaning of “Nothing About Us Without Us”. Don’t hold a meeting discussing developmental disabilities at anytime, anywhere or anyplace without" us" in the room. If it’s not a self-advocate, then a parent who’s child has given them the right to speak on their behalf can stand in. Contact us, we'll show you how. It's not hard and doesn't even have to include a colored marker, though the illustration above by Dr. Beth Mount, is brilliant and her work is outstanding as is John and Connie O'Brien's.
Do yourself a favor…look in the mirror….you’re not the change agent you think you are if you are doing this out-of-date, offensive technique.