By Nathanael Bassett
Receiving a diagnosis of autism can cause a lot of different feelings for parents or individuals who always knew there was something a bit “different” going on. For some, it can be affirmation about concerns and questions you always had, for others it can be scary and create all sorts of worries. I’m innately familiar with the process. My seven year old daughter was diagnosed with sensory processing disorder fairly early, and recently received a “soft” autism diagnosis pending further evaluation. My three year old recently received an ASD diagnosis of Level 3, indicating her severe developmental delays and enabling her to get as much support as we needed.
Much of the confusion and stress comes from the differences between what we call “neurotypical” individuals and “neurodiverse.” As with other forms of disability, society holds what we call “ableist” views of ideal ways people should behave or function. To put it simply, the world is often built for the “able-bodied” in ways we don’t always acknowledge or recognize. The existence of curb-cuts demonstrates how people had to fight and advocate for their differences in order to help make the world more accessible. This is a physical example of how design in the world favors the able-bodied, but when it comes to the social world, we still see society has expectations about how we should interact and behave. And when we are worried about how people don’t meet those expectations, it causes a great deal of frustration.
Since autism is often diagnosed when children are young, it is the (often neurotypical) parents who go through the process of learning about autism, ideally going from initial confusion, to awareness, to advocacy. This article is written for the perspective of families and caregivers of young people with autism, and intended to help manage the stresses and come to terms with who your neurodiverse child is. There are several important things to know when you receive an initial diagnosis of ASD, regardless of what level they are diagnosed as and how much support they may need.
Number One: It’s not your fault
Oftentimes as parents we are worried about how we have messed up our kids. There’s a great deal of confusion about the causes of autism, and people may mistakenly believe that they “caused” their child’s autism if they let them watch too much TV, or if they exposed them to something environmentally, or otherwise allowed it to happen. The scientific consensus indicates that ASD has a strong genetic component and that developmental delays occur because of hereditary factors. This means nothing you did caused your child’s autism. You need to let go of the guilt or the idea that this is somehow your fault.
Number Two: Your child is still the same child
You may have had some suspicions before, but remember how you felt about your kid before they received the diagnosis? Nothing has changed about them. They still have the same mannerisms, characteristics and qualities that make you love them. They are still your child. And if you are worried about the label of autism or don’t want them diagnosed, it’s important to remember how that assessment can be important to them. As one autistic adult put it recently in a Facebook group I’m a part of, someone is autistic with or without a diagnosis. If someone doesn’t believe the diagnosis, that’s their right. However, the difficulties someone faces are unlikely to go away, no matter what you call those differences. While it’s important not to deny those differences, it’s more important to come to terms with the struggles they will face in a world built for neurotypical people.
Number Three: You are their biggest advocate now
Your child will have needs that are different from other people. You cannot ignore or wish those needs to go away. Whether our kids are neurodivergent or not, we want the best for them in life. You may have to work differently than other parents to make sure they’re set up for success. This is where the next four points really come into play, but I emphasis this separately because you have to see yourself as advocating for what makes your child and other autistic people unique and different for others.
Number Four: Your child has rights
Assuming you’re in the US, there are laws in place that protect and ensure that your child has a right to have their needs met. In many states there are lots of resources available, but you should be familiar with the Americans With Disabilities Act, terms like Individual Education Programs (IEP) and 504 Plans for schools, as well as Olmstead v. L.C. (1999). Learning about the rights your child has both while they’re in your care and when their adults will help you understand how to advocate for their best interests. A good resource is Welcome to the Autistic Community by the Autistic Self Advocacy Network (ASAN).
Number Five: Take time to absorb, but do not grieve
A new diagnosis is a lot to take in. But as I wrote before, your child is the same child they were before the diagnosis. They are not broken. They are not deficient. As Jim Sinclair wrote in 1993,
“You didn’t lose a child to autism. You lost a child because the child you waited for never came into existence. That isn’t the fault of the autistic child who does exist, and it shouldn’t be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don’t mourn for us. We are alive. We are real. And we’re here waiting for you.
Love the child you have, instead of the idea of one who never was. There are those who say “I hate autism” and it can be very hurtful to those who know autism is a major part of what makes them who they are. Begin to think about how your words and attitudes impact your thoughts and feelings towards the child you have and how that may change the person they will become. Children need our love and understanding to grow into emotionally mature and capable adults.
Number Six: Gather information
Begin to study and educate yourself about autism. Take the time to listen to autistic people speak and write about their experiences. It may be hard to recognize if your child is non-speaking right now, but this doesn’t mean they won’t be non-communicative. Odds are they understand you, they just can’t react in a way that you might expect a neurotypical child to react. Learn about what organizations and ideas work to improve the life and experience of autistic people, versus those who promote hurtful and dangerous ideas. If you spend time listening to parents, caregivers and autistic people, you’ll learn there are a lot of different perspectives to navigate.
Number Seven: Find support groups
This one is very important. It’s hard to go through this on your own, and others can help immeasurably. While finding a babysitter or child care may be difficult, other parents and caregivers can help to relate and understand and provide advice. These can be online or in-person: go searching on social media. Look for services and support in your community that can help engage you and your child in activities which will help enrich their lives and develop them into mature individuals. Poppy Life Care offers several different types of programs and therapies which can help. Take the time to explore our website and see what we have to offer.