Your First Four Steps After an Autism Diagnosis: A Guide for Self-Care and Planning
Overview: This article offers guidance on the first four steps to help an individual upon receiving an autism diagnosis.
Introduction
Learning that you have autism can be an overwhelming experience. The goal of this article is to provide the First Four Things to do after receiving your diagnosis. Many individuals will want to jump straight into treatment and find support while others may want to sit with their emotions. The goal is to do both in manageable steps. It is as equally important to feel and process the news as it is to get to work with a plan to ensure that you’re living your best life.
The steps to successfully accept and address your diagnosis are:
Feel
Learn
Small Changes
BIG PLANS
Step 1 – Feel
The emotions that accompany an autism diagnosis often mirror the stages of grief. These emotions and resulting thoughts can be something like:
Denial – “The diagnosis can’t be right, can it?”
Anger – “How did it take so long to get a diagnosis?” or “Why is this happening to me?”
Depression – “My life is changed forever. This is hopeless.”
Bargaining – “What if I get a second opinion, or treatments, or medication?”
Acceptance – “It is such a relief to have an accurate diagnosis.”
Experiencing these and the other myriad emotions that come with a diagnosis are essential steps in the path to successful adaptation to being autistic and should not be ignored or discounted. It is important to feel, share, and work through your emotions as they occur and for as long as necessary to get to the final acceptance stage. It is often helpful to discuss your feelings with a care provider, confidant, or spiritual leader. Whichever route you take, it is essential that you allow yourself to actually experience the emotions and that you do not attempt to rush or “power” through the feelings.
Step 2 - Learn
The second step on the path of living with autism is to educate yourself on what the diagnosis actually means. Unfortunately, this is sometimes difficult as the world is full of misleading information about autism. It is important to find trusted sources of information that can explain the diagnosis in evidence-based terms. Most important is to learn what autism looks like for you. Put simply, every autistic person is different, and you need to know the unique ways the condition affects you.
One approach to identifying your individual impact from autism is to create a comprehensive list of all the issues you currently or historically struggled with. It may be helpful to have your caregivers assist in this process. The list could include emotional, physical, and cognitive issues, such as:
difficulty concentrating
not wanting to eat certain meals
having low self-esteem
struggling to make and keep friends
struggling to control your emotions
struggling with math
having consistent stomach aches
disliking certain shirts or clothes
Next, take your list to a care provider – therapist, psychiatrist, psychologist, or doctor – and discuss each struggle in terms of how or whether your autism contributes to the issue. This exercise will help you learn what autism means for you and help identify any other conditions you may be experiencing that cause some of the struggles.
Remember that the symptoms you experience after an autism diagnosis are the exact same symptoms that you struggled with before the diagnosis. You are not a different person now. You are the same person, dealing with the same challenges and experiencing the same joys. The only difference is that you now have an understanding of the cause of your struggles and thus a path to living with them more successfully.
Step 3 – Small Changes
The next step is to make small changes or baby steps, if you will. Confer with your care providers, friends, and family to identify any simple, immediate changes that you can make to alleviate some of your struggles. This is not about large, systemic changes in your life. This is about simple fixes that can provide immediate relief. This is also not a lowering of the bar for yourself, but rather creating accommodations to avoid unnecessary struggles and difficulty.
For example, consider sensory sensitivity which is a common symptom of autism. Maybe there are certain shirts that you find particularly uncomfortable. Stop trying to tough it out and wear the clothing to look nice or to appease someone else. Instead, take action to make yourself comfortable. An immediate fix can be to avoid the clothing item altogether or modifying it to decrease the irritation – do something like remove the tags or buy new tagless shirts. Other examples of easy and immediate changes that may support your overall well-being include:
Create and follow a schedule that allows time for work and free time to improve concentration and task completion.
Request extra help from your math teacher with the content you find difficult.
Request that your family make small changes to meal preparation to avoid the foods or presentations that find unappealing or that contribute to stomach aches.
Again, this step is to find and take small, tangible steps to help you alleviate the symptoms that may be too difficult to manage on their own. Do not lower the bar and feel or act as if you are incapable, but do accept that you have a medical condition and make changes that allow you to better manage your daily life.
Step 4 – Big Plans
The fourth and final “First Step” is to develop long-term plans that will help you to be the best version of yourself. This is about getting help and can include seeking out resources such as:
Education support such as an Individualized Education Plan or 504
Disability services
Mental health therapy
Psychiatric support
Occupational therapy
Speech therapy
Social skills groups
This is by no means an exhaustive list of the resources that may be available or beneficial to you. Some of the available support services may not pertain to your unique symptom presentation. Each of the support systems can be beneficial in their own way and it is worth the effort to explore, including discussing all potential options with your parents, care providers, school, and/or other professionals when you are ready to do so.
While these resources may have tremendous value, they are all also part of the long-term treatment planning. The process of getting approved for some services can be lengthy; you may even have to be put on a wait list. It may be difficult or overwhelming to apply for all services at once, but at least start to investigate the relevant options and enroll as you are able. Remember this is a life plan and you want to make sure that you have these options in the future even if they are not currently necessary or available. Planning will help you feel in control of your diagnosis and will likely pay off in a significant way as you progress on your journey of living with autism.
Summary
Receiving an autism diagnosis can be challenging and illuminating, but it’s the first step in living a full and successful life. Understanding the cause for your daily struggles is helpful in its own right. Accept the emotions that come with your diagnosis and do not rush past the myriad of feelings you are likely to experience – feel them and talk about them. When you are ready, try to learn as much as you can about the specific effects autism has on you. Once you’re armed with knowledge, get to work taking small steps and making big plans. And through every step of your journey never forget to accept and process your emotions. You got this!
