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:

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  • 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:

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    • 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

    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

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    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
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      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.
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    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

    Energy Drinks Linked to Serious Heart Problems

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    Energy drinks can cause dangerous heart problems and even death, according to research presented at the European Society of Cardiology Congress. French researchers said the cardiovascular problems associated with energy drinks include anginaheart attackcardiac arrhythmia and sudden death. This research, presented to the cardiologists’ meeting in Spain, is based on a review of adverse event reports submitted to the French agency for food safety, A.N.S.E.S.
    One researcher, Professor Milou-Daniel Drici, warned of the dangerously high level of caffeine in some energy drinks. He explained that large amounts of caffeine cause “a massive release of calcium within cardiac cells.” This calcium release can cause irregular heartbeats and other potentially serious heart problems.
    Dr Drici expressed concern about how the public uses energy drinks especially with alcohol and physical exercise. He noted that in these situations people commonly drink several energy drinks creating a potentially dangerous situation.
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    “The general public need to know that so-called ‘energy drinks’ have absolutely no place during or after physical exercise, as compared with other drinks designed for that purpose. When used in long alcoholic cocktails, the caffeine in ‘energy drinks’ enables young people in dance clubs or elsewhere to overcome the unwanted effects of alcohol, leading to an even greater intake of caffeine, ” said Drici.
    In the U.S., over 270 adverse event reports relating to energy drinks were filed with the Food and Drug Administration’s (FDAs) Adverse Event Reporting System, according to Bloomberg View. Thirty-four of these adverse events resulted in deaths. In March 2013, a group of doctors and other professionals wrote to the FDA asking that these drinks be regulated, reports the New York Times. The doctors asked the FDA to regulate the drinks because “there is evidence in the published scientific literature that the caffeine levels in energy drinks pose serious potential health risks, including increased risk for serious injury or even death." Despite the number of adverse events and calls for regulations by doctors, energy drinks are not regulated in the US.
    Doernbecher Children's Hospital and Intelihealth have information and advice for parents about energy drinks and their use by children and young adults. The Mayo Clinic's website has several articles with information on energy drinks and their ingredients.

    This article was originally published by me on