This is a post for parents and caregivers whose child has recently received an official Autism diagnosis. An official Autism diagnosis can represent a major life shift, both for a child and their support system. Yet it can also be one of the most important steps in learning how best to support a child’s needs so that they can feel safe and supported as they learn and grow. 

It is still understandable that parents and caregivers just receiving this news have a lot to think about, from how best to support their child to processing their own emotions to figuring out exactly what is supposed to happen next. 

In this post, we hope to offer some initial guidance and guardrails as you navigate the change that can come with a diagnosis.

When the person or people we are supporting receive an official Autism diagnosis, the uncertainty of the evaluation process gives way to a whole new type of uncertainty: how do we move forward? What do we need to do next? 

We might be considering these questions at the same time we are processing emotions that we might have consciously set aside while waiting for the outcome of the evaluation. As was the case in our blog post: Seeking an Autism Evaluation, one of the best ways we can begin to navigate the uncertainty of a recent diagnosis is to start on areas that can be under our control right now.

One of the best early steps you can take following a diagnosis is to consider the types of support your child might need going forward and applying for relevant benefits. 

One place you can check out some of the potentially available benefits depending on your situation is in our free Financial Planning for Families Toolkit. 

One of the best places to start can be looking into your state’s Medicaid Waiver Application . While the Medicaid Waiver program varies from state to state, eligible recipients receive considerable financial assistance for supported community living. The main drawback to the waiver is that many states are limited by how much they have budgeted, and those who cannot receive funds yet are on a waiting list. On the other hand, there is no penalty for applying too early and if your child becomes eligible before age 18 they can wait to collect those benefits until then. 

Taking this early step can be hugely beneficial to your child’s future and put you ahead of the game in terms of preparing for the eventual transition to adulthood.

Another change you may need to consider after receiving an official diagnosis is how things will change for your child at school. Some change is inevitable with a diagnosis, as every diagnosed child is at minimum legally entitled to an Individualized Education Program, which sets individualized goals for a student with measurable outcomes. 

Beyond the IEP, there may be discussions of the best educational setting for your child and whether they should remain in a gen ed classroom or move to special education. The answer may vary depending on your child’s needs, but the most important thing to remember is that you are your child’s advocate in these situations and your knowledge of their needs can make a big difference in how planning goes.

One reality of learning that a person we are caring for has received a diagnosis is that we need to reevaluate whether what we are currently doing is the best method for meeting their needs. It may very well be the case that you and they are already settled into a comfortable routine that doesn’t need to change much. 

It’s also possible that the routine is harmful in some ways and need to be changed. This process is not about feeling guilty for things we might have done wrong but rather acknowledging the new information we have and finding ways to make sure we are accounting for it in our daily living. So if we need to adjust a schedule slightly to allow for more time between transitions or reconsider some food choices due to sensory issues now is a great time to do that!

When navigating the reality of receiving such big news, it can be all too easy to lose sight of the reality that life is unpredictable and people are unpredictable with or without an Autism diagnosis. Like any other child, Autistic children will grow to develop their own preferences and needs based on who they are and the world around them, and there simply isn’t a way to be certain about how things will go. 

So when an intricate plan doesn’t quite go as expected or a promising sensory tool doesn’t get the desired outcome, we are allowed to experience our frustration, but we also need to remind ourselves that it is part of the process and part of our role as caregivers.

We hope this post has offered some basic ideas of where to start when processing an evaluation. If you would like to see us go more in-depth on this topic in a toolkit or longer series then we would love to hear from you! Just drop us a line at hello@autismgrownup.com and let us know what is on your mind.