Sounding the Alarm - an accurate portrayal of autism?

The documentary, Sounding the Alarm: Battling the Autism Epidemic looks at the lives of 12 families whose children have autism  The families discuss the challenges they face raising children with autism.  The documentary is available on Netflix.  




At the start, we meet the Lawrence family whose 3-year-old son, Bradley, has autism.  The family is moving from their home in North Carolina to Indiana, which they state has better insurance coverage for autism. 

We also meet the Mojica family whose 14-year old son Adam is autistic.  They talk about their concerns for Adam's future.  They state that these concerns prompted them to set up a trust for Adam instead of buying their own home. 

We also meet John D’Eri who opened a car wash to employee people with autism.  D’Eri’s inspiration was his son who is autistic.




A significant part of Sounding the Alarm is dedicated to the story of Bob & Suzanne Wright, the founders of Autism Speaks.  It describes how they started Autism Speaks in 2005 after their grandson Christian was diagnosed with autism.  Bob Wright states that Autism Speaks was started to
  • Raise awareness
  • Advocate for people with autism
  • Support families
  • Support research
We learn about their testimony before Congress and how Suzanne started Light It Up Blue.  Interestingly, no other autism support group is mentioned.

After watching this documentary, I am concerned about the impression it gives of people with autism.  The abilities and disabilities of people with autism vary tremendously, however this documentary focuses on those who have significant problems because of autism.  The only employed people with autism we meet are John D’Eri's son and others who work in the car wash.  Viewers learn nothing about people with autism working in other types of jobs or the recruitment of people with autism by large tech companies such as SAP.

The families express concerns common to many of us with a child on the spectrum including:
  • Costs of treatment
  • Waiting lists
  • Lack of insurance coverage
  • Little or no support services for adults with autism
  • If placed in care, their nonverbal children would not be able to report abuse
However, most of what we see and hear from the families focuses on the negatives – people selling their homes to pay for therapy, parents injured by their children and unable to have social lives.  Very little family happiness is shown or discussed. Although we are told about the cost of therapy, little information is provided about children making progress because of these therapies.

This documentary lacks information provided directly by people with autism.  There are a few sound bites, but nothing substantive.  We do not meet anyone with autism who is attending college, practising self-advocacy or just living a happy life. No one with autism is asked how it affects them or what services would help them.

If you know nothing about autism, you won't get a balanced view from this documentary. But, watching it will educate people about some aspects of autism including:
  • Challenges faced by parents on a daily basis
  • Financial costs to families
  • Need for respite services for families
  • Lack of services for adults with autism

Have you seen this documentary?  If so, what did you think?



Disclosure:

I am a member of the Netflix Stream Team and have received a free Netflix subscription and streaming device as part of my membership.  All opinions expressed within this post are my own.







©Mary M Conneely T/A Advocacy in Action

AUTISM: Preparing Your Child for Adulthood


As parents of children with Autism Spectrum Disorder (ASD), we are so busy getting our children the supports they need now, we do not have time to think too far into the future. If your child is a teen or young adult with autism, now is the time to plan for his life after high/secondary school.

Unlike children without ASD, our kids face unique challenges as they transition to adulthood. Things that other children pick up instinctively are foreign to our children.  

The transition to adulthood is a topic frequently addressed by Dr Peter Gerhardt. Dr Gerhardt has over 30 years' experience working with older children and adults with ASD.  He states, in practical terms, the issues our children will face as adults with ASD and the need to develop
 transition plans for them. Developing this plan begins by reflecting on several questions:


Machova on OpenClipArt.org
  • What is the goal(s) for my child after second level/high school education? A job? Further education?
  • Where is my child going to live after he graduates? At home? At school? Independently?
  • What does my child want to do after graduation? Is his goal(s) realistic and achievable?
  • What do I want my child's social life/social circle to be after graduation?
  • What is he or she going to do for leisure activities?
  • Is my child going to be part of a religion?
  • What are my child's interests?
  • What are my child's strengths and weaknesses?
  • How can my child's strengths be used to achieve our goals?
  • Will my child's weaknesses interfere with achieving our goals?
  • If so, can we do anything to minimize these weaknesses?
  • What skills does my child need to learn for life after graduation?

Use these questions to start a discussion between your child, you and your child's school about planning for your child's future.  Central to these discussions should be the quality of life you want your child to have as an adult.

This short video is part of a presentation by Dr Gerhardt on how to help teens with autism transition to adulthood.




    Dr Gerhardt recommends thinking about what skills your child needs to develop or improve on to help with his or her "personal safety, community integration, transportation, health and wellness, sexuality and aging" - which he describes as essential life skills. He emphasizes that real world skills need to be taught in a real world environment and not in a classroom.  For example, if you are teaching a child how to grocery shop, go to an actual grocery store.


    Gerhardt states that it is necessary to prioritize the skills needed for the transition to adulthood. He suggests prioritizing skills that are "useful across multiple environments" such as safety skills, functional communication, self-monitoring of behavior, personal mobility and self-advocacy.


    With regard to successful community integration, he notes that skills such as "polite eating, good hygiene, appropriate sexual behavior and aggression avoidance" are needed and may not be developed properly in young adults with ASD. 

    Include the following items in your child's transition plan:

    Designed with icons from OpenClipArt.org
    • Assessment of your young adult’s needs, interests, and abilities 
    • Preferences for education, employment, and adult living 
    • Steps to take to support achievement of these goals 
    • Specific methods and resources to meet these goals, including accommodations, services, and/or skills related to the transition goals 
    • Instruction on academic, vocational, and living skills 
    • Identification of community experiences and skills related to future goals 
    • Exploration of service organizations or agencies to provide services and support
    • Methods for evaluating success of transition activities
    • A timeline for achieving goals
    • Identify people or agencies to help with these goals
    • Clarification of how roles will be coordinated 
    • A plan for identifying post-graduation services and supports, and obtaining the necessary funding

    ETSU.edu

    Planning for life after graduation for an adolescent with ASD is complicated but essential. This post provides an overview of the various issues that need to be examined and can help you get your plan started. Always keep in mind that it is your child's life and you should get her views when planning for the future.

    For additional information on this topic see:

    Strengthening Support for Adults with Autism*

    Life Journey Through Autism: A Guide for Transition to Adulthood*  

    Bridges to Adulthood for Learners with Autism Spectrum Disorders* - slides from a presentation by Dr Gerhardt 


    *Sources for this post
    ©Mary M Conneely T/A Advocacy in Action

    Special Needs Parents: Are you creating the important paper trail?

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    Parents of children with special needs end up with lots of paperwork.  We have medical reports, school reports, IEPs, therapy bills, insurance forms, etc. 

    We know keeping these documents organized is important, so we can refer to them when needed.  However, some parents are not aware of the need to establish a paper trail.




    Why should special needs parents make a paper trail?

    A paper trail is important because it is a way for parents to:
    • Make a record of any requests for information or documents
    • Confirm the main points made at any meetings about their children
    • Document any requests made to children’s schools or medical providers
    • Confirm actions schools or medical providers agreed to take
    • Summarize and confirm important information related to you by the school or medical providers

    Few of us go through this special needs journey without running into some bumps along the way.  Even if everything is working well at the moment, special needs parents must prepare for potential problems.  When these problems arise, having a paper trail helps:
    • You remember what you and other parties said
    • Remind you of any issues raised with children's schools or medical providers
    • Identify actions your children’s school or medical providers were supposed to take
    • Recall requests made to your children's schools or medical providers

    How do I make a paper trail?


    Creating a paper trail is simple.  Parents document their actions and those of their children’s schools and medical providers by writing letters or emails.  Here are some situations you should confirm in writing:
    • The main points of any school meetings, including IEP meetings
    • Any action teachers or schools tell you they are going to do
    • Concerns you express to your children’s teachers or schools 
    • When a doctor, psychologist or other medical provider tells you they will send you a report or educational information
    • Actions you ask schools or medical providers to take
    • If schools do not take actions they said they would take
    • Symptoms and other information you give to your children’s medical providers
    • Disagreements with teachers or schools
    • Disagreements with medical providers 


    A key part of a paper trail is your ability to show that the information was sent.  So, besides sending a letter by mail, also send the letter by fax or email.  Then, print the fax report or email showing the information was sent.  Use certified or registered mail for letters discussing very important issues.  If you do not document an action or issue using a letter or email, keep a log of your phone calls and conversations.  In the log include:



    • Date of contact
    • Type of contact
    • Names of people involved 
    • Reason for contact
    • Any action you or the other party is supposed to take





    You can download a PDF of the contact log here.
    ©Mary M Conneely T/A Advocacy in Action

    Ten Tips for Creating an Inclusive Classroom

    Michael Coghlan on Flickr
    An inclusive classroom is designed to maximize the potential of all students in the class no matter what their abilities.  In practical terms, it means a typical classroom includes students with and without special needs.  Some of the benefits of an inclusive classroom are:
    • Students become aware of people’s differences and accept them.
    • Students learn to work together and support each other.
    • Students with special needs are less likely to feel isolated or socially excluded.
    • Teachers use different teaching methods to facilitate the students' different learning styles and this helps all students.


    Here are ten ways to make a classroom more inclusive:
    1. Arrange students’ desks in groups so they learn about and from
      US Dept of Agriculture on Flickr
      each other. 
    2. Make a set of classroom rules with input from the students at the start of the school term.
    3. Avoid sensory overload when decorating the classroom and setting up learning centres. Decorations should foster a calm and welcoming environment.
    4. Make sure learning centres or stations are physically accessible to all students.
    5. Use variety in learning centres to address different learning styles and levels of skill development.
    6. Have equipment in the classroom to facilitate different teaching styles including a white board, visual aids, audio player/recorder, large pads of paper, paper and pens in different colours, etc.
    7. Give students choices when assigning homework.  For example, if a worksheet has 20 problems, tell the students to each pick ten to do.  If a book report is assigned, let students choose how to present the information.  It could be the traditional written report, an oral report, a slide show, or a combination of these.
    8. If a project requires students to work in pairs or groups, the teacher chooses the students who will work together.  The students do not pick who they want to work with and this avoids a student feeling bad if they are the last student picked.
      US Dept of Education on Flickr
    9. Teachers support struggling students, whether or not they have special needs. For example, teachers give students a "preview" of the topics they plan to cover the next day or week.  The preview can be anything that helps the student.  For example, if students are struggling with math, the teacher gives them notes with examples they can review at home.  If students have trouble taking notes in class, teachers give them outlines of the topic.  The students take notes on the outline when the subject is taught.  Teachers encourage students to preview the topics on websites like Khan Academy.
    10. Teachers explain the concept of inclusion and how it works to parents. Encourage parents to express comments and concerns to the teacher throughout the year and not just at parent teacher meetings.  In addition, ask parents to help in the classroom.  Teachers ask parents to read to groups of students, help with science projects, assist with arts and crafts or help develop learning centres.

    For more information on inclusive classrooms and learning centres see:






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    ©Mary M Conneely T/A Advocacy in Action
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