Information on self-advocacy for parents with a child who has Autism or Aspergers syndrome


Advocacy is often needed when supports and services for Asperger's syndrome, autism and other developmental disorders are so minimal. If you find yourself needing to be a self-advocate, use these steps to assist you plan and implement your own advocacy campaign.

Though the following plan is not specific to any particular type of advocacy, these techniques are based on educating rather than directing. Work through each step as they are presented before moving on to the next one. Remember, this is only a guide, so use your best judgment when planning to self-advocate.


STEP 1 What do you want to advocate about?

The first step in this process is to clearly identify what your goals are. You may have more than one goal; however it is important to remember that all your goals should be specific around the issue you are advocating. Make sure you write down things as you go so that you don't forget anything and you remain focused on your task. Having a goal is essential when you are self-advocating so that you have something to work towards. It also means that you have a sense of achievement once you reach that goal (and so you should!).

Another step that may be useful is to gather as much information about the issue as possible (this may be paperwork, notes, receipts, or other general documents). This will not only help you keep focused and motivated on your goal(s), but may be useful during the advocacy process. Again, make sure that any information or documents you have are specific to the issue you are self-advocating about. You may want to read through the information again to make sure you are familiar with it.

So now you have set your goal(s), but if you are going plan effectively you may need some more information. It may also be beneficial for you to have a strategy and some evidence. A strategy is a list of details related specifically to how you will achieve that goal or desired outcome. Evidence relates to the information or proof that will let you know you have actually achieved that goal or outcome. This format for planning not only gives you a comprehensive tool for self-advocating, but also the best chance at being able to achieve your goals. Don't forget to check off each goal as you complete it.


STEP 2 Who do you need to speak to?

Who you actually need to talk to resolve an issue can sometimes be very confusing. If the reason you are advocating is because of a particular organization, then you should contact that organization first to start the resolution process. Remember, you must always give the service provider or organization a reasonable opportunity to resolve the issue. It will be helpful to become familiar with the complaint process of the organization you are dealing with.

In some cases you may not have been previously dealing with a service or organization The issue in this instance may be that you are not able to organize a vital service, or you have not received some information that you really need. You may have to contact a Government Department or an independent organization (such as a Union or specific Advocacy group). If you are not sure who to contact, please click here to view a list of contact details in specific categories to assist you in finding the most appropriate service. If the people you call can’t assist you, make sure you ask them if they know of anyone who can.

Always remember to make notes of the names of people you speak with, what you spoke about, and the date you spoke with them. Keep these notes somewhere safe along with any other information you may have gathered.


STEP 3 What do I say?

What you say or write to an organization or service provider is very important as it may influence how long the advocacy process takes. Make sure that you focus on your goal and are as specific as possible. If you are going to speak with someone on the phone about your issue, it may be helpful to write down what you are going to say before hand. If you are going to write a letter or an email, make sure you read through it a few times to make sure it is clear and to the point.

State clearly the issue you are talking about and indicate what action you think should be taken to resolve it. Make it clear that you are giving the service provider or organization a chance to fix a mistake or omission if that is the issue.

It is important to remember that although you may be upset, you should always be polite and keep your cool. State your case calmly, clearly and confidently. If you find that the situation is becoming too much, calmly tell the person you are speaking with that you will call them back later and hang up.
Always remember to ask if you are unsure about anything (or you need something clarified), there are never any stupid questions!


STEP 4 What if I need someone else to assist me to advocate?

Why would you need anyone else to speak on your behalf? Depending on the issue you are dealing with, you may need a professional to communicate your views to the organization you are dealing with, or assist you to organize a service. For example, if a medical issue is involved, a doctor may have to write a letter or speak with someone directly for the advocacy process to continue or for a service to be implemented. Don't ever feel bad if you wanted to advocate purely on you own and you had to involve someone else, sometimes it is the only way to resolve an issue; it in no way means that you have failed.

Getting assistance from a family member or close friend is another good way to self-advocate if you are having trouble getting your point across. Your family and friends often know your situation well and they can work with you to achieve your goal.


STEP 5 How do I make contact?

There are several different methods you can use to self-advocate; phone, email, letter, fax, or the media. Choose the method that best suits you, or the one you feel most comfortable with. Remember that the way you raise your issue will be different from place to place. Some organizations will only accept letters. Our website at provides sample letters and other useful tips.


STEP 6 How do I tell if it’s working?

Hopefully after Step 1 you have completed a plan of how you are going to self-advocate i.e. your strategy, evidence and goals. The best way to evaluate how you are going with the advocacy process is to take some time and review your plan. If (for a specific goal) you have completed the strategy and you now have your evidence, then you should have completed your goal, congratulations! If you feel that your goal is completed, make sure you check it off your list. This will not only give you a sense of achievement, but also prevent you from doing any additional, unnecessary work.

You may however, not feel as though the goal has been completed, even if you have done the strategy just as you outlined. If this is the case, then you should go back and review the strategy, evidence, and goals you have set yourself. It may be a matter (especially after you have now had some experience) of redefining some of your strategies or evidence to better suit the goal you have. You might have found that the strategy you identified does not work or is not practical and you may need to make some changes. Additionally, you may find that the goals you have previously set are too big or too broad. If this is the case, you may need to re-evaluate your goal and break is up into smaller, more manageable goals. The benefit of this is that you have a more realistic idea of how you are progressing, and you should know a lot earlier if things are not going according to your plan.


handy tips for self-advocacy

• Keep all relevant records and documents

• Record important information during phone conversations
• Ask for the company's policy and procedures on complaint resolution
• Remain calm and specific to your goals when dealing with people
• Ask to speak to someone higher up if responses aren't satisfactory
• Ask if there is an external agency that can help resolve the issue
• Keep trying - never give up.


Where can I receive help with self-advocacy?

There are several ways you can receive assistance with self-advocacy planning. Check with your nearest autism or Asperger's syndrome association and see if they can assist with any self-advocacy issues. Unfortunately, advocacy support is time-consuming so most associations will not offer direct support with this. However, they may be able to provide general advice, or refer you to advocacy supports if they exist in your state or country.


Visit the self-advocacy website at which has plenty of online information and self-advocacy resources. You can also request assistance by using their feedback section or emailing them directly. Features of the website include:

• An online Interactive Self-Advocacy Planner
• Service directory with over 75 categories
• A guide to making contact with organizations
• Information downloads
• Glossary of advocacy terms.


See the Family and adult issues section of the website for more information for parents.


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Parents often need to advocate for themselves and their autistic child to receive the support they need.