According to the CDC, autism spectrum disorder (ASD) is currently diagnosed most in boys aged around 4 and a half years old, but can be diagnosed as young as 18 months and into adulthood for either gender. Usually, some of the earliest concerns noted are lack of social skills or verbal communication, repetitive patterns of behavior, limited interests, and emotional regulation problems.
Because ASD often is diagnosed in early childhood, it can be difficult for parents to fully understand or explain it to their child or children. However, it is noted by adults with autism and mental health experts that knowing about your own diagnosis is vital to happy and healthy development and can lead to greater independence in the future.
In this article, we’ll discuss the main reasons for telling your child about their diagnosis, and how you can tell them in a way that they understand at any developmental level.
Why is it important to tell my child about their diagnosis?
Some children will naturally come to understand their own differences, especially if they’re growing up with close-aged siblings. However, they may never come to the conclusion that they have autism on their own. It’s vital for parents to speak with them openly about their own diagnosis early and often.
Knowing about their diagnosis can mean:
- Better mental health – Individuals with autism are at a higher risk for mental health conditions, such as anxiety disorders and depression, according to the National Alliance on Mental Illness. Knowing that they have ASD and that these are heightened concerns can help motivate them to seek help earlier, self-advocate more effectively, and decrease confusion. Knowing why certain things are harder for them than others can often diminish the feelings of self-doubt, feeling like they’re not good enough, or feeling like something is wrong with them.
- More engagement in and more effective treatment – When a child understands their autism diagnosis, they can be better included in their own treatment. They can help inform goals, understand why they’re being treated in the first place, and persevere even when it gets difficult. These are all things that will increase the overall effectiveness of treatment in the long term.
- More independence and autonomy, which leads to greater happiness – Knowledge and understanding of their own diagnosis means an opportunity to figure out ways to communicate effectively and get their needs met. Over time, they will be able to communicate, function, and problem-solve more and more on their own, with less assistance from others.
What is autism?
The first step in talking to your child about their autism diagnosis is making sure you understand what it is and what it means for them and your family.
The official diagnostic criteria (based on the Diagnostic and Statistical Manual, Fifth Edition, or DSM-5) for ASD says that an individual must have persistent deficits in three main areas of social communication and interaction and at least two of four types of restrictive or repetitive behaviors.
So, an individual must have deficiencies in each of the following:
- Social-emotional reciprocity – For example, inability to hold back-and-forth conversations, limited sharing skills, or unresponsiveness to their name or other social interactions.
- Nonverbal communication – For example, facial expressions that don’t match the conversation, lack of or reduced eye contact, or limited understanding or responsiveness to gestures.
- Developing, maintaining, and/or understanding relationships – For example, inability to adjust behavior for different situations, difficulty with imaginative play, trouble making friends, or reduced interest in peers.
They must also show at least two of the following types of rigid behaviors:
- Stereotyped (repetitive) motor movements – For example, hand-flapping, rocking, vocal repetition, or lining up objects or toys.
- Insistence on sameness– For example, an overwhelming need for routines, ritualized patterns of behavior, difficulties with transitions, or inflexible thinking patterns.
- Highly restricted, fixated interests – For example, strong attachment to unusual objects, persistent interests in one specific topic, or preoccupation with one or more unusual toys, items, or activities.
- Hyper (too much) - or hypo (too little) - reactivity to sensory input – Apparent indifference to pain, strong responses to typical but loud noises, or visual fascination with lights or movement.
In addition to the above, individuals diagnosed with ASD must also:
- Show symptoms in early childhood
- Show symptoms that cause significant impairment in social, occupational, or other areas of functioning
- Not have a diagnosis of intellectual disability or other global developmental delay that better explains symptoms
But what does that mean for my child and our family?
Autism “spectrum” means that it can look and feel different for every individual, every family, and even day to day. It’s important to understand this and the fact that comparisons and assumptions about ASD will likely not be helpful. While frequent changes of behavior may be difficult at first, they can be a great opportunity to learn more about your child, to help them find solutions that work for them, and to seek additional resources and therapies, like those provided at Forta.
Families should focus on typical differences that come with an autism diagnosis rather than the medical language. Conversations about these differences can help children with autism and their siblings understand each other more fully.
Consider talking about how people with autism may have:
- Different brains – Sometimes they may learn in different ways, remember things differently, or problem-solve in different ways
- Sensory differences – Sometimes they may feel things more or less strongly than others, they may be more or less sensitive to sights, sounds, or smells, or they may play differently
- Communication differences – Sometimes they may speak too much or not at all, sometimes use communication devices, like an iPad talker program, or sometimes they may express their needs in ways that seem unusual, but that doesn’t mean they’re not communicating them
- Thinking differences – Sometimes they may have trouble understanding some situations or may think things are happening differently than they are, sometimes they may want to complete tasks in different ways, or they may need extra time to do things around the house
However, even with all of these differences, people with autism are still learning, living, communicating, and thinking just as much as anyone else.
Is my child disabled or sick?
We understand how difficult and confusing it can be when your child is first diagnosed with ASD, and then to determine what to do next. Some of the first questions that may come up for parents when faced with a new autism diagnosis are: Are they sick? Will they be okay? Are they disabled?
It is especially important to address these fears with your child because they are likely having them, too. Your team at Forta can begin services with your family quickly, supporting you and limiting the time spent waiting to have these important conversations.
However, you can start with understanding that people with autism are not sick, and it’s not an illness in the sense that getting treatment or medication will make it go away. Autism is a neurological condition that makes up some of who each person with autism is. In the medical community, and the world as a whole, autism is a disability because it affects the way they live in the world, which is not set up for autism.
Most places are built for neurotypical people, just like most places are built for non-disabled people in general. For instance, if a building has steps up to the door for entry and no ramp, people in wheelchairs have a disadvantage to using that facility. The same is true for people with autism; if they have hyperreactivity to light and sound, a grocery store with a blaring radio and bright fluorescent lights may pose a significant disadvantage to them.
However, individuals with autism and their families can put supports in place to make the world more accessible. Families can try using headphones to help with sound input, sunglasses to block out bright lights, shopping or using facilities at their least busy times, or seeking out “autism-friendly” services, as these are becoming easier to find. Talk to your child about things that may make them more comfortable both at home and out in the community, and try those strategies at the next opportunity.
Positives about having an autism diagnosis
The last really important part to talking with your child about their autism diagnosis is to highlight the positives. While having an ASD diagnosis will present your child with challenges throughout their life, there are also a lot of constructive, pragmatic, and fun things that come with it, too.
Below are a few of the positives about an autism diagnosis to talk to your child about:
- Creative problem-solving – Thinking differently means people with autism often have great new ideas that others haven’t thought of before. They also may come up with incredibly creative solutions to problems or new ways of working on things.
- Positive thinking – People with autism can often find joy in things other people barely even think about; they might absolutely love airplanes and get excited each time one passes overhead, rather than getting annoyed at the noise pollution as others might.
- Subject experts – Sometimes individuals with autism can have very strong special interests, which means they will enjoy learning all they can about them. This might even mean that they have more knowledge to share on a topic than almost everyone else.
- Community members – There is a vibrant and thriving autism community that they are now a part of. They will be able to find friends, mentors, and employers that share similar strengths, interests, and experiences. There are resources, books, electronic media, and hobbies specially created just for them.
- Readily available supports – Treatment and services for people with autism are becoming easier to access, especially when combined with ever-advancing technology. Forta’s focus on tech means a more streamlined experience for children and families without excessive wait time or lengthy onboarding processes.
Talking to your child about their autism diagnosis: when and where to start
Whether your child is newly diagnosed with ASD or they’ve had their diagnosis for a while, the time to start talking to them about it is… as soon as possible!
These conversations should look different depending on your child’s age, developmental level, and your family structure. As parents, you know your children best, and you can determine how much information is appropriate, and when to share it. It’s best to have several small conversations over time, rather than talking about it once and forgetting about it.
Some tips for you to start with when talking to your child about their autism diagnosis:
- Focus on uniqueness – Talk about how everyone is different and special in their own ways. Give real examples from each family member; perhaps Dad has a certain way of loading the dishwasher, but then the cups always get cleaner. Maybe big sister spends too much time playing video games, but that also means she can help when Mom gets stuck on the computer. What makes each person unique?
- Be inclusive – Include your other children in these conversations, rather than having them individually with your child with autism. Make sure all your children understand the diagnosis and what it could mean for the whole family, and include everyone in supporting and problem-solving.
- Name it and love it – Don’t be afraid to use the word “autism.” Naming the diagnosis will give your child a sense of understanding, and the more the family talks about it, the less new or different it will feel. Show your child that you love them and interact with them the same way as you did before their diagnosis, because nothing has changed. Love them with their diagnosis, not in spite of it.
- Normalize it – Find books, TV shows, games, and people that put autism at the forefront. Your child should be able to see lots of different examples of what their diagnosis looks like on others to better understand themselves. Autism should be a normal part of your family’s every-day life.
- Follow their lead – Your child should be the one to decide who, what, when, where, and how much of their diagnosis gets shared with others. This may not always be possible (like at school), but whenever it is, your child should decide how they talk about their autism diagnosis outside of the immediate family.
- Answer questions honestly – Be open to questions from your child and answer them honestly to the best of your ability. If you don’t know the answer, it’s okay to tell them that. Then, spend time together finding the answer or reach out to your Forta team for help.
We understand that getting an autism diagnosis can be complicated for families, and Forta is here to help. Being open and curious about your child as an individual is the best way to move forward, and we do the same for each child we serve.
Once there is an understanding of what autism is, how it affects your child, and what strategies are helpful, there’s no limit to the progress and development available to your family. Starting conversations early and often, focusing on positives, and finding support and treatment quickly can lead to great success.