So, You’ve Got a Diagnosis—Now What?

Posted on by Nicol Walsh

Many people say that discovering you have a disability changes everything but also nothing. What does this mean? It means you’re still you. You’ve just learned something new about yourself—whether it’s Autism, ADHD, dyslexia, a movement disorder, or another condition, it’s something new about you. This can feel overwhelming, but with the right mindset, you can turn this challenge into strength. Think of it this way: imagine you’re a Mac in a Windows world. You operate differently and may have unique strengths, but the world often caters to Windows users. Knowing you’re a Mac opens doors to resources that can help you thrive. The key is to advocate for yourself because no one else can do it for you like you can.

Understanding Your Social Identity

A big part of advocating for yourself is recognizing how society views disability. Many people misunderstand disabilities, believing the person is broken or diseased. This unfair and negative perception, known as stigma, can make it tough to ask for help or even acknowledge your disability.

There are different ways of understanding disability. More medically centered approaches focus on “fixing” disabilities through treatments, but this isn’t always possible or even wanted. The social identity focused approach around disability emphasizes that disability is a natural part of human diversity. It’s about finding ways to fit into a world that often overlooks your needs. By understanding this, you can begin to build a community with others who share similar experiences. Finding support is crucial; it shows that your disability isn’t a tragedy, just a part of life that may need some adjustments. The internet can be both a powerful asset and a source of frustration, but finding advocacy resources, both in learning about advocacy and finding advocacy support organizations online can help you find a better path forward. Here is a resource on understanding the way disability is viewed in society, using a framework called the ‘models of disability.’

Embracing All of You

Many young people try to separate their disability from who they are. They might only mention it when things go wrong or view it as a flaw. But remember, while having a disability can bring challenges, it’s still a part of you. Instead of hiding from it, embrace your whole self and seek out people who are invested in supporting you.

Some people identify as “deaf” rather than “a person with hearing loss” because it emphasizes that being deaf is an integral part of who they are, not something separate. It’s important to use the language that feels right for you when describing yourself, your disability, and your needs. Whether you choose “disabled” or “a person with a disability,” what matters most is that you feel comfortable and understood. Embrace the words that best reflect your identity and help others understand and support you.

Talking About Your Disability with Peers

Deciding whether to share your disability with friends, classmates, and others has its own benefits and risks. If you have a visible or obvious disability, the choice may be out of your hands. However, if you have an invisible or non-apparent disability, it can be hard to determine when to disclose. As one autistic person stated, “Dealing with the stigma is hard enough, so I try to think about it on a need-to-know basis. The secretary doesn’t need to know I’m autistic. But my teacher might need to know, for multiple reasons.” This fact sheet includes some things to consider when disclosing your disability.

Here’s a quick overview of the pros and cons of talking about your disability:

Pros:

  • Practice Sharing: Learning to talk about your disability now can prepare you for future conversations, like with a job or college. If you don’t get a chance to talk about your own disability, it might be difficult to be clear about your needs.
    • Better Understanding: When friends know about your disability, they may understand your behavior better and support you more.
    • Building Allies: Sharing your experiences can help friends learn how to provide support that is genuinely helpful.
    • Authenticity: Being open allows you to be your real self, which can relieve stress.
    • Social Insights: You’ll learn more about what social situations work for you and which don’t.

Cons:

  • Bullying and Stigma: There can still be negative reactions to disabilities, and sharing might make you a target. Know your rights if this happens.
    • Different Treatment: Some may treat you differently or be overly cautious. Make sure to communicate your needs clearly.
    • Feeling Tokenized: You might find yourself labeled as “the disabled friend.” It’s important to remind others that you’re still you and not a representative for all people with disabilities.

Understanding Disability

Disability is about recognizing that all brains and bodies work differently, and that’s okay. If you’re disabled, it fundamentally means your brain or body functions outside what’s considered typical, like with ADHD, Cerebral Palsy, or Autism.

The Disability Justice movement celebrates disability and emphasizes that it’s perfectly fine to need accommodations. Most importantly, it encourages you to own your experience and find community. For many, having a disability is more than just a diagnosis; it’s part of their cultural identity. Embracing this can help you counter stigma and connect with others.

Succeeding in School

Receiving a diagnosis can impact your academic life positively. While it might feel scary to seek different support, remember these programs are designed for your success. You have a say in what works best for you.

There are two main types of school support:

  • A 504 Plan: This is a tailored agreement made by teachers, parents, and you to provide accommodations that help you succeed. Examples include extra time on tests or shorter assignments.
  • An Individualized Education Program (IEP): This involves specialized instruction and requires more meetings. IEPs can provide more tailored support, but you still have the right to learn in the Least Restrictive Environment (LRE) possible. This means that you are entitled to the most normative classroom environment and instruction that you can be successful in.

PAVE has prepared downloadable toolkits to help you ask and receive support at school, including Where to Begin When a Student Needs Help and Planning My Path: A Toolkit for Young Adults.

Transitioning to Adulthood

As you grow older, it’s important to focus on your support needs. School offers many resources, but once you leave, it’s often up to you to find support systems.

Two important skills for adult life with a disability:

  • Engaging with Services: Finding things like job coaching, community support, and other resources that can help with daily living.
  • Self-Advocacy: Understanding your needs and communicating them to others—like employers or family—will be crucial for your success. Self-advocacy is a lifelong skill that many non-disabled people struggle with, so it is important to acknowledge that learning this skill is a critical part of becoming a successful adult. To learn more about self-advocacy, check out the PAVE calendar for teen and adult self-advocacy groups.

Another important topic to understand is accommodation. Accommodation means making changes in your environment to help with challenges related to your disability. This could be as simple as a wheelchair ramp or allowing remote work for someone on the autism spectrum. Requesting accommodation effectively is one of the most critical components of self-advocacy. The Parent’s Place of Maryland has a useful document that can help you develop the skill of disability disclosure.

Building Your Community

Support services can sometimes fall short; that’s where community comes in. Surrounding yourself with people who understand your disability can be incredibly helpful. It’s important to give and receive support while setting healthy boundaries. Always prioritize your own needs and seek out resources that can help you connect with others who share similar experiences. Finding community is a significant challenge, especially with an epidemic of loneliness, it can be even harder for people with disabilities. This is why it is important to find people who share your disability and can understand our perspective and help provide that essential sense of community and togetherness in a way that is informed by your own social needs, not society’s norms.

Final Thoughts

Your journey as an individual with a disability can be challenging, but it can also be filled with opportunities for growth, connection, and self-discovery. Embrace your identity, seek out support, and remember that you are not alone.

For additional support, you can fill out a Get Help request on the PAVE website. They help youth and young adults with disabilities, as well as parents, family caregivers, and professionals. If you have questions, a PAVE team member can call or email you to provide you with information, training, and resources specific to your needs.


Download the Navigating a New Diagnosis infographic

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