From Diagnosis to Action: The First Four Essential Steps for Families

Overview: This article provides guidance on the first four steps that a family should take after a loved one receives an autism diagnosis.

Introduction

Learning that one’s child or other loved one has autism is often an overwhelming and scary experience. The goal of this article is to provide the First Four Things that a family member should do upon learning about their child or loved one’s diagnosis. Some people want to jump right into finding solutions and looking for answers, while others focus on their feelings,often mulling over their emotions for extensive periods. Neither approach is right or wrong, and both are essential in manageable amounts. Feel and process, but also get to work.

The steps towards accepting, managing, and helping a loved one live their fullest life after an autism diagnosis are:

• Feel

• Learn

• Small Changes

• BIG PLANS

Step 1 – Feel

The emotions that accompany an autism diagnosis often mirror the stages of grief. That does not mean that everyone feels each of these things; however, these are some common experiences. These emotions and resulting thoughts are something like:

• Denial – “The diagnosis can’t be right, can it?”

• Anger – “How did it take so long to get a diagnosis?” or “How did this happen?”

• Depression – “Our lives are changed forever. This is hopeless.”

• Bargaining – “What if we get a second opinion, or treatments, or medication?”

• Acceptance – “It is such a relief to have an accurate diagnosis.”

Going through these stages and processing the myriad emotions that come with the diagnosis should not be ignored. It is important to feel, share, and work through your emotions when they present for as long as they present. It is also important to discuss these feelings with a care provider, confidant, or spiritual leader. Whatever you do, it is essential that you recognize the validity of your emotions. Do not suppress or rush past them.

Step 2 - Learn

The world is full of misleading and conflicting theories of what autism is and what causes it. It is important to find trusted sources of information that explain the diagnosis in evidence-based terms. Most importantly, you need to learn what autism looks like for your family member. Put simply, every autistic person is different, and you need to know the unique ways that it affects your loved one and your family.

One way to approach this learning process is to prepare a detailed list of the issues you have noticed your family member struggles with. Include everything and do not leave issues off due to prior or preconceived explanations for the issues. The list could include emotional, physical, and cognitive issues. Examples could be:

• having an overly messy room - refusing to eat meals or foods

• having low self-esteem - repetitive statements

• struggling to control their temper - struggling with math

• consistent stomach aches - disliking certain clothes

Once you have a list, consult with care providers – therapist, psychiatrist, psychologist, and/or doctor – and talk about what may be attributed to autism and what may not be. Try to learn what autism looks like for your loved one and what issues may be attributed to other co-occurring conditions (see Article on “Co-Occurring Conditions for more).

Remember that the symptoms your loved one is struggling with after their autism diagnosis are the exact same symptoms they struggled with before the diagnosis. They are not different people now. They are the same individual living with the same things, only now you have an explanation of what lays at the root of those issues. You are all one step closer to finding the tools and balance for a happy and full life.

Step 3 – Small Changes

The next step to successfully living with the autism diagnosis is to make small changes to manage the previously identified struggles. Talk with your loved one’s care provider(s), potentially including your loved one in some or all of the conversations, to identify simple, immediate changes that can be implemented. This is not about large, systemic changes in your or your loved one’s life. This is about simple tweaks to provide immediate relief from their struggles. While you do not want to excuse behaviors that can be controlled or lower the bar for expectations, you do want to help your loved one feel comfortable and supported.

For example, many autistic individuals experience sensory sensitivity which makes certain clothing items uncomfortable for them. Maybe your loved one refuses to wear certain shirts because of a sensory sensitivity. Instead of trying to encourage or force them to wear the nice shirt for school every morning, you can accept that certain tags are genuinely uncomfortable. You could then help them to remove the tags or purchase tagless shirts as an immediate fix. Other examples of easy fixes that may alleviate household stress could be things like:

• make a small change to mealtime to accommodate food preferences

• create and post visual reminders on how to keep their room tidy

• set aside time to help with math homework or other subjects they struggle with

These should be small, tangible steps that help your loved one to navigate symptoms that may be too difficult to manage on their own. Resist the urge to just do things for them, but do provide small layers of support.

Step 4 – Big Plans

The final “First Step” is to develop long-term plans that will help your loved one be the best version of themselves. This can include seeking out resources such as:

• School support, like an Individualized Education Plan or 504

• Disability services

• Mental health therapy

• Psychiatric support

• Occupational therapy

• Speech therapy

• Social skills group

This is not an exhaustive list of resources that may be available or beneficial, and not every autistic person is going to need every one of these avenues of support. But each type of support has its individual benefits and should be considered. There is no harm in discussing all potential options with your loved one’s care provider, school, and/or local community health providers when you are ready.

While these resources may have tremendous value, they are all also part of the long-term treatment planning. Getting signed up and approved for services like this can take time and you may have to be on a wait list. It may not be possible to do all at once, but at least start to investigate the options and enroll as you are able. Make sure that your loved one has options available in the future; doing so will likely pay off in a significant way as they grow and mature.

Summary

Learning that a loved one has autism can be challenging, but it is also the first step in moving forward. Do not rush past the emotions that come up – feel them and talk about them. When you are ready, learn as much as you can about the specific effects of autism on your loved one. Once you are armed with knowledge, get to work with small steps and big plans. During the entire journey, never forget to process your emotions as they come up, remembering this was and remains one of the essential four steps forward.