“Help! I have a child who was just diagnosed with High Functioning Autism. Should we tell them? How do we even begin that conversation? Is it necessary?” – Mom
Over the years, many parents have asked me this question. Let me share with you from my personal experience and the tales I’ve heard as I have explored this topic with Adults with ASD, who teach me daily with their stories and experiences.
Let me start with what we don’t want and then work backward, considering the diversity of the children hearing this news and the dynamics of the individual families.
The last thing any of us want is anything that resembles the traumatic movie scene where a child inadvertently learns that they are in fact adopted and not related by birth to the only family they have ever known. “What? You’re not my real mom?” The magnitude of such a family secret being unveiled painfully and unexpectedly is evident as we, the moviegoer, watch the child or adult process this news that influences every part of who they have been and who they believe themselves to be. Can you imagine the feelings as you process this unexpected news, as you grew through childhood and learned more about yourself, made choices about who you wanted to become, the depth of what is interpreted as deception was hiding in the background every step of the way? To make matters worse, this child’s trusted parents held this secret as they watched their life play out, making the decision for them, that it was better than they do not know the truth. We have seen this storyline play out in blockbuster films and Lifetime Movies time and time again. My parallel is not intended to exaggerate or offend.
My personal conviction is that, while utterly unrelated, neither adoption or having an ASD diagnosis is quite as profound or life-altering as this type of scene would have us believe. I think both are somewhat normal, states of being, who cares about labels anyway. The truths that I hear time and again from adults with High-functioning ASD, particularly those who have struggled socially or with depression in their histories, is that uncovering this lack of information from their trusted parent is a painful experience.
Having ASD impacts a person’s ability to effectively communicate the hardships they’ve experienced navigating some of the social developmental milestones. It is likely that we, as parents do not have an entirely accurate perception of the specific struggles, the depth of a struggle, or the ways they worked to find solutions and processed these kinds of hardships they have encountered as an older child or adolescent with ASD.
No parent who chooses to withhold this information from their child is doing so from a wrong place. Clearly, they love their child. There are or could be negative aspects to the notion of “labeling” a child. These are things that should be talked about and planned for and not dismissed. Hearing that you are “different” may not be an easy pill to swallow. After all, what does that mean anyway, different from others, different from who I thought I was? Just how different am I? When did I get different? Will I always be different? What will this mean for me later? Does everyone know I am different, is it obvious? There are so many questions that our children will inevitably process to some degree as they develop and mature whether they can articulate them to us or not.
So, what do we do? Basically, anything that does not resemble the scene described above is OK. As they grow and develop they will both question and understand more and more about what ASD means in general and what it means to them. Your child is a unique individual, your family is equally unique, there is no one size fits all answers but I hope the following list is helpful as you navigate this educational opportunity.
Tips: Here goes, there are 7.
- Tell them
Again, no one wants to learn that they are the last to know any piece of relevant personal information, but you have tons of freedom in how you tell them, when you tell them, and the words you choose. Have conversations with fellow moms about what they did, have practice conversations with loved ones or experts. The words you choose make a difference, but they need to be a fit for you, your family, and most importantly, your child. For one child hearing that their autism makes them gifted and brilliant may be helpful, for others it may be awkward and out of place. This should be comfortable, you will be using your words to encourage, educate and grow your child throughout their whole life. This conversation is really just one of many. Do what you need to do to feel comfortable having the conversation.
Make the format of the conversation fit your family. If you have a family that does family meetings, then do your thing! If you have never held a family meeting, this is a really awkward time to start. If your family debriefs over meals, perhaps this is an excellent place to chat about ASD. If your crew is being bussed around in a soccer mom minivan, and conversations happen when the child in the front seat, this may work just fine. This conversation should not feel like you are unavailing terrifying medical test results. ASD is literally just a different way of thinking and processing information, this is not “bad news” and should not have that feel to the conversation. If you have friends or family with ASD, this is a good time to talk about how ASD impacts them. Find some examples that are less obvious, show them how big this spectrum thing is. Keep “normalize” in the front of your mind. This is such a critical piece, but the subtle details of how to “normalize” this information are completely connected with your own “normal.” Good luck, you got this.
- Keep the conversation going
This is not a one-time conversation. Consider any complex teaching topic, like how babies are made, for example, we need to keep circling back to this topic as they grow yes to normalize, but also because the depth of questions and comprehension is a fluid thing. They are actively learning and building on new knowledge. Our job is to provide the setting and help tweeze fact from fiction in the process. I often hear that kids will say to their parents that they have forgotten they had this talk. That means you did a stellar job of normalizing, to the extent that they just didn’t recognize that this was valuable information. It also likely means that they just aren’t able to effectively use their words to keep the conversation topic moving. “I forgot” can be a fantastic communicative crutch that lets the kid sit back and take a passive role in a conversation. This is perfectly ok. Remember, giving ASD quizzes to our kids would be weird and the opposite of normalization! If they “forget,” tell them again, and keep it going. On that note, keep the conversation going means to open the conversation regularly in a natural context, not literally talking about ASD continually. Making ASD the focus because we never stop talking about it or rarely speaking on other topics is equally weird and quite the opposite of normalizing.
- Plug them in with ways to answer their own questions
Learning is an active process. One big way to get new information is from your parents! However, your parents should not be the only way. What a great teaching time this can be! Maybe they can talk with a safe friend that also has ASD, perhaps they can chat supervised on-line with other kiddos or specialist? Perhaps it is a good time to plug them into counseling or the support of a school counselor and let them grow their own support network? Clearly, this is one to individualize for your child on the details of when and how, but remember that you are not the sole provider on information. Start identifying other safe alternatives for your kiddo to go to when they need, a friend, a family member, a professional. There are many choices, but what a great time to help them build their own village.
- Teach them scripts for telling others
It’s a little unfair that ASD makes additional social barriers because as we’ve been talking about how to communicate this stuff to our children, we can see that it is a pretty complex topic. This can be really challenging for kiddos on the spectrum. For your kiddo, it may be simple, “I have Autism.” Other kiddos can be though to say, “It’s actually not your business.” If that’s how they want to navigate the conversations in their social circles. From now through adulthood, they may need some specific help in determining how and when to disclose this type of information. Be ready with scripts, “You can say…” , flood their tool bags with any shortcuts you can find that will support them along the way.
- Talk about confidentiality and privacy
This may not be something you thought of or considered. One thing I see all the time is how many kiddos feel unnecessarily isolated in school because they just do not understand the confidentiality rules that teachers have to follow. Inadvertently, teachers not talking about your child’s ASD or the ASD diagnosis of the other kiddos in the class can make it feel like a faux pas. It can feel like the awkward elephant in the room, people probably know but aren’t talking about it; therefore it must be “bad.” That’s an unsettling and confusing feeling! This can all be alleviated, by sharing with your child that their ASD diagnosis is protected by confidentiality and privacy laws. This is their personal information and others really do not have the right to talk about it openly without reason or without you or your child’s blessing. This is a simple educational nugget that may save some misinterpretations later.
- Give them ownership of thier own diagnosis
Momma friends, this can be hard. We are known for our warrior-like status. We are advocating and educating to any continent store clerk or child on the playground that will hear us! Some of us tattoo our puzzle pieces on or display our decals proudly from our minivan windows. All of my Facebook friends and followers are familiar with the abundance of ASD fact sharing and inspirations I use to flood their news feeds! I have fought hard in this role as ASD Warrior Mom, and I do not plan on stopping in my personal and professional crusade! In my zeal, I must remember that my child also has a right to determine the type of disclosures they feel are appropriate in each season. At what point does my passion rob them of their choice to participate in their own disclosure choices? This is not a condemning response, I hold this tip close to my heart as I always want to show my daughter’s successes and victories. I must maintain the mental framework, I am proud of my daughter. I love who she is! She is so many things, but only a small part of that is her diagnosis.
I hope this information was helpful to you as you brave new conversations or keep the discussions at home going! Feel free to comment or share from your own experiences. This dialogue is how we all grow!
Thanks and God Bless.
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