advocating with your autistic child

Acting in support of your autistic child should always involve you advocating with them and not for them. This is possible even with younger children. When you read over the tips below, consider how you might involve your child appropriately in the process.

If it’s not appropriate for your child to attend meetings that address problems, consider how you can represent their wishes. You might like to make a video of them speaking about their needs and show this with their consent. Alternatively, they might participate by drawing a picture or communicating their feelings in some other way.

image shows a young child and an adult sitting together at a table, both with pencils in their hands (they appear to be drawing on paper)

When advocating with your autistic child at school, in health settings, or when accessing therapeutic services and social/family services, you can help ensure their rights are upheld by:

Building a supportive team around your child

Your child’s team will include all of the people who care for or support them regularly and who already understand the needs and rights of your child. Your child’s team may include extended family, speech therapists or occupational therapists and any other person invested in your child’s wellbeing. The team will help to support your child’s right to be their best autistic self.

Knowing what your child needs

Know your child best. Many people coming into contact with your child may assume that they know what your child’s needs for accommodation are, or what your child’s learning preferences are (for example). These assumptions are often well-meaning and based on prior experience. However, what worked well for one child in the past, may not work so well for your child today – so know how and what your child needs and share your knowledge and experience of your child. Be clear. Set out your expectations for your child and be specific in terms of what that looks like.

Growing your advocacy skills

Practice being assertive. You have every right to speak to ensure that the needs of your child are met. This can be challenging for many people who may find it difficult to say what they think or know about their child, particularly when it needs to be said to a professional such as a teacher or a doctor. Knowing that what you are asking for is reasonable and necessary, should enable you to assert your views, without being adversarial as a starting point.

Image is of a parent and child crouched down together on a city street

How to advocate with your child in meetings

This step-by-step guide will assist you to work through the process necessary to address the issue and advocate for change.

Step 1:
 Be prepared! In advance of any meeting, ask for copies of any reports to be discussed and a meeting agenda, not less than seven (for example), days in advance. Also ask for a list of invitees, so you know who will be present.  This will provide you with the opportunity to understand any issues that are likely to arise and to formulate your own questions around those issues. Make notes about the issues you would like to address in advance of any meeting.

Step 2:
 Call in professional back up. If an issue is likely to arise at a meeting and you have strong views that the way in which the issue is being addressed is not appropriate, ask one of the professionals in your child’s team to provide a written report or attend the meeting in person to advocate with your child to ensure that their needs are met. For example, if your child is being asked to remain seated for too long and is having difficulty meeting the demands placed on them, ask your child’s Occupational Therapist to provide a report explaining why the demands are inappropriate and suggest some accommodations that may be made to assist your child with meeting requests.

Step 3:
 Bring a friend. Having someone you trust, a family member or friend, at any meetings will help you feel emotionally supported. Your friend can also help you to keep notes on what is said and remind you of any issues that you wanted to raise.

Step 4:
 Keep records. Keep a note of any actions decided in the meeting. Ask that a review date is set, and communicate when and how you want to be formally updated on follow-up actions. Ask for a copy of any meeting notes and check these following the meeting against your own notes to ensure that there is an agreed understanding of what the next steps are and who is responsible for which actions. If there is a discrepancy in what you have recorded and any official notes, raise those issues in writing and seek clarification.

Step 5:
 Know where to go next. If you are not satisfied with the results of the meeting or actions taken, ask for or locate a copy of the Inclusion policy and contact an Inclusion Officer/Specialist for children with disabilities. They are there to ensure that schools follow their own practice and procedures when it comes to being inclusive and they can also assist you in advocating with your child, if your efforts are not making headway. If you ask for details of your local Inclusion Officer or Specialist at the school reception desk, they are required to provide those details to you.

Always ask to see the policy relevant to any issues that are arising and, if your child is in a private or special school placement, ask for a copy of their Complaints Policy. If you need to raise concerns, speak to the teacher or health care worker directly involved with your child first, before escalating your concerns should that be necessary.

Step 6:
 If you find steps one to five do not achieve the results you desire, you might consider taking your concerns further. Where you go to seek support or to attempt to affect change will depend on the specifics of your concerns. Options available include getting legal advice, contacting a professional advocate and contacting your local member of parliament or other government representative.

This information is also available in a downloadable PDF.