Self-Advocacy & Self-Disclosure: Advice for Teens on the Autism Spectrum

The purpose of this article is to get young people on the autism spectrum thinking about how they can actively advocate for themselves rather than passively accepting “things as they are” or settling for a one-down-position in various situations or aspects of life.

We will look at both self-advocacy and self-disclosure, because disclosure (i.e., telling others about your diagnosis) to the right people is a primary way to advocate for yourself. When self-disclosure works well, it has positive effects for interpersonal relationships. On the other hand, when self-disclosure does not work well or you disclose to the wrong person, it can lead to lowered self-esteem, embarrassment, and relationship deterioration – or termination!



Self-Disclosure—

The hard part for many teenagers with ASD level 1 (high-functioning autism) is telling friends, classmates and coworkers about their diagnosis, given the prevalence of ignorance in regards to Autism Spectrum Disorders in general. Many ASD teens want to be honest and share their diagnosis, hoping that others will be accepting and supportive. While there are many compassionate people out there who will be, there are also many who won't be – or aren't ready to be.

So, should you tell people about your autism? It depends on what your needs are and if you're ready to accept the good or bad results that may stem from your disclosure. Self-disclosure is a tough decision. It's crucial that you take the process seriously – and protect yourself. In any event, there comes a time when decisions have to be made as to who to tell and what to tell about your disorder.

It can be quite a challenge to tell peers about the struggles you are experiencing. ASD teens look “normal” (of course), yet many suffer terribly – often on a daily basis. It’s the absence of obvious physical clues that cause other people to minimize the full extent of the challenges that accompany autism spectrum disorders. Thus, it’s wise to decide carefully who you tell. Despite numerous campaigns to raise awareness of autism, there are always going to be individuals in your life who do not (or will not) understand your disorder. Unfortunately, these people are capable of inflicting further distress.
 
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Here are some guidelines that Brandon, one very smart 19-year-old Asperger’s teenager, used to make the task of telling others about his diagnosis easier and more empowering:

Before I tell anyone about my diagnosis, I want to be clear as to why I am telling this person. In one case, this person was my boss and I needed to explain some absences. In another case, it was a friend because I needed his assistance on a school project. So, I always want to be clear what it’s that I hope to achieve by telling any particular person. Knowing this helps me cope with negative reactions that I may receive. I don’t want to disclose for the wrong reasons. So, I make sure I know what my true motives are for revealing my Asperger’s.

I have a pamphlet on Asperger syndrome and have it on hand to give to people should they require further information. A lot of people out there are poorly informed about autism spectrum disorders in general, and providing them with good information benefits me in the long run. Critics in particular are more likely to react more favorably to well-informed documentation than a personal, emotionally-charged monologue delivered by me.

When I need help from the person I am disclosing to, I try to be clear about what form that help should take. I find that a lot of people are more than willing to help, but don’t have the faintest idea of what to do. This is where I need to be specific about my needs. So, I write my thoughts down on paper before sharing them. This is a useful practice for clarifying my reasons for telling a particular person about my special needs.

I think it’s important for my own mental health to share my disorder with a few specific people. Some are willing to assist me, and some have walked out of my life once they were aware of the true nature of my disorder. A few others have even teased, bullied, or ignored me all together. I expect this. I expect to be hurt by some of my peers and acquaintances. But I don’t let this aspect of some people’s characters put me off telling significant others.

Lastly, I try to prepare myself for all possible reactions from the other person. I remind myself that I can’t control other people’s reactions or belief systems, but I can be prepared for what to say in response to any questions I may encounter. Telling other people, regardless of their reactions, is a truly empowering experience in most cases.
 
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Self-Advocacy—


Self-advocacy teaches ASD teens to identify issues that mean the most to them. It helps them prioritize their hopes and dreams – and to make certain that nothing gets in the way of achieving their goals.  

Here are some important tips for learning self-advocacy skills:

1. ASD is nothing of which to be ashamed. It’s a part of who you are, but it does not define you. Once you realize this, and that you are capable and intelligent, you should be able to step up and take on some of the responsibility of self-advocacy. In the meantime, remember, you are still a teenager.

2. The road to becoming your own greatest advocate begins by being as informed as possible about your disorder. There are dozens of books (some more scholarly than others) that you can read to help yourself understand that this disorder is not your fault and to learn patterns of behavior you have come to see in yourself, but didn’t know what they meant.

3. Another aspect of being a good self-advocate is to pay careful attention to yourself. Learn your idiosyncrasies and pay attention to the things that work for you, along with the things that don’t work. For example, if you have certain obsessions or compulsions, understand what they are and find out ways to get around them (if needed, and if possible).

4. Know your strengths. Teens on the spectrum are often gifted with an above average I.Q. It’s likely that you excel in one or more academic subjects. Also, you probably have an intense interest outside of academics (e.g., music or computers). Knowing your own strengths will help you gain much needed self-confidence.
 
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5. Recognize and accept your weaknesses. Just as with your strengths, you must also be mindful of your weaknesses. For example, teens with ASD sometimes struggle with language based academics. Social skills and sensory problems may be weak areas for you as well.

6. Participate in counseling and group therapy to help keep yourself focused. Counseling sessions are useful for teens on the spectrum. This is a place where you can talk about how your strengths and weaknesses make you feel. In group therapy, you can learn new strategies for coping in social situations.

7. Regarding school-related issues, remind staff that you are an individual and must be viewed as such. There is no single solitary program or approach that works effectively with ALL students – even if they have the same diagnosis. If you can't learn the way teachers instruct, then teachers need to instruct the way you learn.

8. If you have a problem with a certain teacher, remember that an adversarial relationship between you and that teacher is typically never in your best interest. It's sometimes easy to fall in the trap of blaming teachers for disappointments or a particular issue. However, blame doesn't typically result in anything more than bad feelings and an ill-willed outcome. Instead of blaming your teacher, try the opposite approach: keep calm, know the facts, and advocate about meeting your unique needs. Propose solutions or create a possible plan that works best for you and the teacher. Be open-minded and hear proposed solutions from your teacher’s side as well.

9. Be an active participant in your IEP process and know your written goals. Also, take part in your IEP meetings. Once you acknowledge your own strengths and weaknesses, your input can help the IEP team set reachable goals.

10. Understand that your school’s Principal is a key player. You MUST have the loyalty, support, faith, and cooperation of the Principal in order to advocate effectively for yourself in the school setting.




Self-disclosure and self-advocacy are core communication skills. Being proficient at using these skills means that you express yourself effectively and stand up for your point of view, while also respecting the rights and beliefs of others. These skills can help with stress management, boost your self-esteem, and help earn others' respect. Some teenagers seem to use these skills naturally, but if you're not one of them, you can become skillful by utilizing the information above.