Advocating for Your Child at School

From the Autism Awareness Centre Inc. Blog:

Schools are run much like the government – everyone has their post, responsibilities and territory, and that is what employees stick to. I was a teacher for 13 years and know that you have to be careful about overstepping your boundaries. You can’t promise what you can’t make happen. The school is only as effective as its administrative team is. Poor leadership frequently means no solutions, solid information, or resistance to change.

Even with all of my experience both as a parent of two children with autism and as a teacher, I had difficulty advocating for appropriate support for my daughter when she was in Grade 6. I’d like to share some tips that could help in the best possible outcome for a school advocacy meeting.

1. Bring a photo of your child and place it on the table. Open the meeting by emphasizing that this child and his or her well-being is the focus of the meeting. There are no winners, losers, or politics – just this child’s needs.
2. Make a list of the difficulties your child is having. Divide that list into categories such as academics, socialization, communication, and behavior.
3. Make note of any changes in mood, academic progress, or regression of skills.
4. Bring documentation of any assessments you have had done privately or through other programs that may be relevant in making a proper assessment of your child’s needs.
5. Do not point the finger at any one person, particularly a teacher. Administrators will always stand behind their teachers and so will the school board. Speak in general terms if you can.
6. Assess who is offering insight or solutions about your child. Ask how well they know your child and how many times they have met your child. Some “experts” make suggestions for your child based on one observation or just by reading reports – this is not good enough.
7. In regards to an IEP, ensure that the IEP goals are based on cognitive assessments or informal assessments such as the Vineland, which tests adaptive functioning, or the Brigance. These tests do not have to be performed by an educational psychologist, so they are much easier to give.
8. Whatever suggestions, solutions, or supports are given in the meeting, ask for dates when those will be implemented, how those interventions will be assessed, and how you will be kept informed on the progress of these changes.
9. Do your own research and offer solutions as well. Parents live with their children and know what works best for them.
10. If you don’t receive satisfaction at the school level, be prepared to go to the next administrative level. A school division breakdown is usually posted on the school board website (who is above whom, etc.)

Try to work as a team. It is the team approach that will ensure the best outcome for your child. Talk positively, try not to assign blame, and state that you know change is possible and have every confidence the team will act in the best interests of your child. Be prepared to follow up to ensure that plans and changes are being implemented.

I Don’t Need a Family Physician… Do I?

We’re often asked, “If I’m healthy, why do I need a family doctor?”

Autism, like other disabilities, does not preclude one from being healthy. However, cognitive and communication differences can complicate identification and management of illnesses unrelated to the disability.

When faced with a medical problem, many people feel frightened and unsure of whom to trust. A family doctor can help with the wide range of health problems that may affect any family member, from babies to senior citizens. In the event of a serious medical problem, you can rely upon your family doctor’s good advice about tests, specialists and treatments. This information will help you make more informed health decisions.

Most people recognize the critical role a family doctor plays in the management of ongoing medical conditions (like high blood pressure or diabetes), but it can be difficult for fit and healthy people to understand the importance of having a family physician, especially if they are rarely sick or have no family history of major illnesses. However, it’s vital to remember that your family doctor’s job goes far beyond treating you when you’re not feeling well.

Most important is the continuity of care that is unavailable at walk-in clinics or the emergency room. Put simply, if your doctor knows what’s normal for you, they’re better equipped to determine what’s not normal for you. An established relationship means you’re not rehashing the same details each time you make an appointment, and your doctor will be there to follow up with you on an ongoing basis to ensure everything is proceeding as normal. Follow-ups at walk-in clinics or the emergency room often require the patient to recount their medical history for a new doctor who is unfamiliar with their case or concerns.

Whether a patient is young or old, a family doctor’s best tool is preventative medicine, which is rarely discussed during visits to the emergency room or walk-in clinics. This is because although preventative health recommendations are of vital importance, they are hardly the most pressing or urgent concerns when a patient seeks medical help from an emergency care provider. Family doctors are the primary resource for preventative health care and can help prevent problems before they occur.

Your family doctor can be a trusted health adviser who plays an important role in your physical, emotional, and mental health, so it’s important that everyone finds a family doctor who they feel comfortable working with and can rely on for care in the long term.
 

Why has primary care become a priority?

Here are the top five reasons why you need a family doctor:

1. Having a regular family doctor improves health outcomes.

According to the Canadian Institute for Health Information, having a primary care physician demonstrates improved patient outcomes, reduced mortality, decreased hospitalizations and reduced health-care costs. You can read more here: https://secure.cihi.ca/free_products/UPC_ReportFINAL_EN.pdf

2. Your family doctor takes the long view – your lifetime – and considers your history, your family history and your potential future. Primary care is longitudinal care over time with a family physician you trust and who knows you well.

3. Your family doctor provides holistic care, treating you (and not just disease) in the context of your family, work and other important aspects of your life. You are more than your joints, your gastrointestinal system and your hormones. Good primary care attends to your body, mind, relationships and spirit.

4. Your family doctor treats all your health conditions – acute and chronic, including your emotional and relationship concerns.

5. The family doctor who knows you well may be the best physician to help you make personal health choices, sorting through information you’ve read on the Internet, advice from friends, and the opinions of other physicians. If you don’t have a family doctor yet, consider these tips when seeing other doctors for episodic care:

• Know your personal medical history (past illnesses, chronic conditions, family history, operations and allergies) and keep a list of all your medications (prescription and non-prescription, including dosages.)

• For any treatment, investigation or prescription, ask three things:

  1. What is it for?

  2. What are the risks or side effects? You should know the common side effects as well as the more rare but serious ones.

  3. What are the alternatives?

• Keep a record of all test results. Without a family doctor, you must take responsibility for your health records.

• Finally, ask this question: "Given my age and family history, what tests should I be doing?" (e.g. mammograms, pap smears, diabetes screening, prostate exams)

Trust in your family doctor will build as time passes. You and your family will benefit as your doctor gets to know you.
 

How do you find a family physician in Alberta?

In Alberta, you can find out if a family physician is accepting new patients’ and which primary care network they belong to. This information is at your fingertips, as all the Alberta Primary Care Networks have come together and have a dedicated site for physicians accepting new patients (including Autism Aware physicians). To find the information you just need, just enter your postal code at https://www.pcnpmo.ca/alberta-pcns/pages/map.aspx

By accessing services through the primary care network, you also can see other members of the inter-professional team, including but not limited to mental health therapists, dietitions, chronic disease management nurses, exercise specialists and pharmacists at no extra cost. There are group classes and other health services available for you to access to ensure you are receiving holistic support in your health journey.

2018 Summer Camps with Children’s Autism Services of Edmonton

Register now!

These summer camps provide a supportive environment, with highly-trained staff who understand your child’s needs. We provide opportunities for your child to try new things and explore new places!

Our dedicated staff will incorporate different themes each week and will plan activities and outings to support our campers with engagement, peer interactions and communication opportunities.

Registration is now open and summer camps fill up quickly! Please note that we have a limited number of spots available.

Summer camps start July 9 and run until August 24 with half and full day camp options.

For more information or to register, please call or email us at 780-495-9235 or summercamps@childrensautism.ca

Autism is a journey I didn’t plan, but I sure do love my tour guide.

When parenting a child on the spectrum we, as guardians, often feel moments of sadness, frustration, fear, despair, and of course joy. When I first had my son, I had so many thoughts about what his life could possibly look like with the “right” influences. Coming from a sporty family like ours, I wondered if he would one day be playing football. I wondered about so many things that I can no longer remember every “if” that I considered. What I do know, though, is that my world completely changed the day we started to notice he wasn’t quite what you would expect when you think of raising a child.

The day of diagnosis I was left with the question of "what now?" Being a single mom of two at the time was insane, for lack of a better word. With no involvement or help from their biological father and seemingly nowhere to turn, I was hit pretty hard. Forgetting the naturally built-in supports I did have, things went into crisis mode pretty fast. What seem like normal everyday things now had my head spinning back then. What the heck were ABA, FSCD, and IEP, among many others? How did I make any of this happen for my child?

In many meetings I was told that my child would never speak, that my child would never be able to use the washroom, and that I would most likely want to look into alternative housing for my child, as he would be too much stress or too much of a burden on my life.

For a while I almost believed these statements. I had almost given up. I was in crisis myself, forgetting the one person who mattered more than myself, the one person who could be in more crisis than myself. This remained a vicious cycle for a few months, until one day I basically woke up. Just the look on my child’s face screamed “have faith in me”.

I started working 20 hour days because of the horror stories I had heard about FSCD funding and the lengths families needed to go to get it. I hired live-in sitters to take care of the children and put the kids in what I call the best learning centre around. During my time there, my son started speaking Spanish! I already had a child with ASD who I didn’t understand, and now there was a language barrier, as well. Still, the centre I put the children in worked hard and fought harder to help my child access resources that I wasn’t even aware existed. At the end of the day I signed a check and came to meetings mainly for me to learn what was happening, because I had no clue.

Through it all, we made it through the first of what I’m sure are many trials that we will have to overcome. I have built an amazing support system and couldn’t be more grateful to the professionals who have worked and continue to work with my child.

Flashing forward to today, my child has achieved all the things that professionals said he would never do. He now speaks English and Spanish when we were originally told he would never speak at all, he can use the washroom, and so much more.

I have learned that my son is a force greater then I could have ever expected or have ever seen, with so much compassion for everyone and everything he encounters. Through my child I have a new understanding and appreciation for many things life may hold, and although our goals for the future have changed and I see things much differently now, I wouldn’t change a thing.

Yes, autism was a journey I never planned, but I sure do love my tour guide.

5th Annual YYC WAAD Event

Monday April 2nd, 2018 from 11am- 2pm
Location: Olympic Plaza map

Come join us for a bubble-filled event for all ages to raise autism awareness and acceptance! This event is free! Follow our Instagram and Twitter @YYCWAAD

In this study, researchers at the Center for Autism Spectrum Disorders at the Children’s National Health System, the National Institute of Mental Health, and George Washington University looked at executive function and daily living skills in women and girls with autism spectrum disorder (ASD). Executive function is an umbrella term for attention, responding to social cues, and acting out appropriately. It also includes planning for and adapting to situations essential to life, such as carrying out basic daily tasks like getting dressed or making small talk with classmates.

Research reports that girls are less likely than boys to receive a diagnosis, with a 4:1 ratio of boys to girls being diagnosed with ASD. This is because many girls have at least average communication and social skills during the diagnosing process, and can therefore ‘mask’ their lack of social understanding. ASD symptoms manifest differently in girls than in boys. While girls with ASD may have reasonably good communication and social skills, those same girls may experience difficulties in planning, organizing and carrying out basic living skills.

This recent and exciting study led by Dr. Emily White published in the journal Autism Research is currently the largest to date examining executive function and adaptive behaviour in girls with ASD. The current study collected parent-reported data from several research-based rating scales looking at executive function (inhibition of behaviour, organizing/planning, organizing materials, working memory, self-monitoring) and adaptive behavior (communication, daily living, and socialization skills). The group included 79 females and 158 males diagnosed with ASD ranging from 7 to 18 years old. The participants were matched by similar IQ level, ASD symptoms and social/communication skills.

Based on parent reports, girls were struggling more than boys with various aspects of executive functioning and daily living skills, as seen below.

Early diagnosis and intervention in ASD are key

ASD symptoms present differently in girls than in boys, and this may eventually contribute to some setbacks, such as being held back in school, lack of meaningful friendships, and even misdiagnosis, the last of which could lead to the delay in implementing specific interventions that would target their ASD symptoms and meet their specific needs. Recent autism research emphasizes the importance of early diagnosis and interventions in children with ASD, as such delays can have a major impact on child development.

"This study highlights that some common assumptions about the severity of challenges faced by girls with ASD may be wrong, and we may need to spend more time building the adaptive and executive function skills of these females if we want to help them thrive," notes Lauren Kenworthy, Ph.D., director of the Center for Autism Spectrum Disorders and study author.

In closing, these findings demonstrate a few of the struggles girls with ASD experience (delays in executive function and daily living skills). There is a focus in providing the right training and interventions to help all children with ASD enhance their executive function and develop strategies to aid in their daily activities.
 

More information: White, E. I., Wallace, G. L., Bascom, J. , Armour, A. C., Register‐Brown, K. Popal, H. S., Ratto, A. B., Martin, A. and Kenworthy, L. (2017), Sex differences in parent‐reported executive functioning and adaptive behavior in children and young adults with autism spectrum disorder. Autism Research, 10: 1653-1662. doi:10.1002/aur.1811

Human beings love to stereotype. We can’t help it, really. The world is vast and complicated, and our brains latch onto all the easy heuristics they can to make the cacophonous mess of information that is life a little simpler. A complex, nuanced understanding of every person, culture, and idea we encounter on a daily basis would be impossible.

So we simplify. We pare it down to the essentials. We aim for a functional understanding rather than a perfect one. Usually, that’s good enough. Sometimes though, our urge to simplify leads to misunderstanding and harmful overgeneralization. I say this in sympathy to all the people who have asked me, “Don’t all autistic people do that?”

Because no, not all autistic people have no sense of humour. No, not all autistic people are math geniuses. No, not all autistic people are gay, nor for that matter are all autistic people asexual. No, not all autistic people have secret savant skills they can perform like magic tricks. No, no, no.

Just like with neurotypical people, many of these traits are relatively rare — even if we found through statistical analysis that autistic people were disproportionately likely to be ambidextrous beekeepers by trade, that certainly doesn’t mean that all autistic people would be ambidextrous beekeepers. After all, if only 1% of Canada’s approximately 9000 beekeepers were ambidextrous (i.e. about 90 of them), and a full 10% of them were autistic… well, that’s only 9 people, isn’t it?

The problem is, most people only know one or two autistic people. If both autistic people that a particular person knows are ambidextrous beekeepers (or East Indian, or gay) they might well assume that all autistic people are honey producers with equal use of both their right and left hands. Some people don’t have a close relationship with even one autistic person, and have their entire conception of what autism is from television and the media. A single portrayal of autism in film can have a huge impact on our cultural understanding autism, for good or ill.

This is an unfortunate flaw of being a member of a small minority that makes up less than 2% of the population: the human tendency to over-extrapolate from an extremely small amount of information and the position of de facto ambassador that puts a member of that minority into.

I will fully admit to being an odd person. I don’t apologize for it. I embrace it. It does, however, pose a problem. As the only openly autistic person in many social groups, my particular eccentricities are often innocently conflated with my autistic identity. Certainly, many of my peculiar habits are linked to autism, but they are still shared by only a minority of other autistics. Face-blindness, the inability to recognize faces; aphantasia, the inability to mentally picture visual images; and hyperlexia, the precocious ability to read at a very young age, are all associated with autism, but I have yet to meet another autistic who experiences all three, as I do. Fewer still are fellow autistics who share my other myriad idiosyncrasies.

I worry often about all the ways that the person I am and the choice I make affect how people see other autistics. I feel the weight of those eyes and the inevitable judgements and false impressions. It lends an uneasy sense of responsibility — I find myself looking over my own shoulder, watching everything I do. This despite the fact that I know the majority of these misunderstandings to be entirely unmalicious. The mental pressure is always there.

It is unlikely that we will ever fully overcome our own understandable tendency to see the world as far more simple than it really is, but what we can do is to check our own impulse to stereotype by using statistical information to supplement the knowledge that comes from our own anecdotal experiences. Personal experience is a far deeper, far more vivid form of understanding, but it is vulnerable to sample bias, where unusual cases that don’t represent the group as a whole accidentally wind up overrepresented. On a broader societal level, we need more diverse, nuanced depictions of people with autism — so that when neurotypical people who lack neurodivergent family and friends are forming their understanding of autism, they don’t wind up relying on poor representations or a skewed group of otherwise good portrayals.