Should I Talk To My Child About Their Diagnosis?

So your child has just gotten their very own Autism Spectrum Disorder (ASD) diagnosis, or at very least, you strongly suspect that they’re on the spectrum somewhere. Congratulations! As a proud Aspie myself it is my honor and pleasure to welcome you and your family to our little community. I really think you’re going to love it here.

Many times when I’m speaking to parents who are just getting introduced to this new world I’m often asked the same question. Whether the child is 4 or 44, parents all want to know: “Should I talk to my son/daughter about their diagnosis? If so, how? When? What if they’re already pretty turned off to or angry about the “label”?

All great questions. I totally get why this might be weighing on your mind. On one hand, it is really nice to know what is actually going on, but on the other hand, there are completely valid worries about Asperger’s becoming a label and an identity. So let’s answer them one at a time.

Should I talk to my child about their diagnosis?

First, and foremost, I want to say that ultimately this is a decision that only YOU can make. At the end of the day, I’m just the invisible, mysterious guy writing to you through the magic of the internet. I’ve never met you or your child personally, and I don’t know your life story. Therefore I cannot tell you exactly what you should do in your specific situation. I can only offer guidelines that tend to apply 95% of the time.

Generally speaking, there are 3 signs to look for in determining whether or not to have “the talk”:

  1. Are they asking questions about why they’re different?– This one is by far the biggest and most important indicator. Are they making comments about how they feel socially different at school or work? Are they complaining about sensory issues? Are they asking why they’re not like “everybody else”? These sorts of questions scream loud and clear that they are aware that something is different, and they’re actively looking for answers and explanations. So let’s give them the information they seek! However, if they don’t see that anything is different about them then it’s probably best to leave it alone for now. Telling them may do more harm than good.

  2. Are they flourishing?– They don’t necessarily need to be a straight A student or have a million friends, but are they generally happy, healthy, and okay with themselves as a person? If most everything in life is hunky dory then I would recommend you take an additional moment to pause and examine the pros and cons of introducing a new variable into that equation.
  3. Are they in Defense Mode?– Put simply, Defense Mode is a state in which someone with Aspergers is scared, frustrated, or angry, as well as shut-down and withdrawn. If your child is deep into Defense Mode then chances are good that trying to have a deep, personal conversation about their diagnosis may devolve into an argument, or alternatively, run into a brick wall of silence. This is because they may unconsciously mis-perceive you telling them they have “Aspergers” as you trying to verbally attack them. For more information on Defense Mode I would highly recommend you check out our article and in-depth course on the subject.

When?

There really isn’t a magic age or perfect day of the week. It’s going to be different for every person and situation. There’s just a couple things of which to be aware while contemplating the best time.

  1. Age and maturity I have heard of parents starting to talk to their child about their diagnosis as young as age 3-4, and at all different ages going up from there. Personally, my parents talked to me about it when I was 12. Really, the biggest thing to look for is a degree of mental and emotional maturity where you feel confident they can mentally and emotionally process and understand what you are saying.
  2. Pick a time when they are relaxed, calm, and out of Defense ModeIf you’re child is having the 2nd worst day of their life, it might not be a good time to try to have a potentially stressful conversation. Choose a time when it seems like they are in a good place to receive the news and engage in a dialogue with you.Or…
  3. Carpe DiemIf your child has already brought up the “I think I might different” topic and they’re asking questions, seize the moment! This is a great time to do it if the opportunity arises because they were already actively seeking the information. The best time to teach is when the student really wants to learn.

How?

Okay, by now I’m sure you’re thinking “This is great and all, but how do I actually do this?”

Well firstly, it’s important to understand that to thoroughly cover EVERYTHING on the this topic this article would need to be more like a 300 page book. So in the interest of me not getting angry letters about my excessively long articles, let’s cover the 3 foundations of the “Asperger’s talk”:   

1st – Ask permission: This one’s pretty straightforward. Simply start by asking if now’s a good time to talk or if they are open to you sharing something. This is a way of making sure you have buy-in from them before starting into the conversation, and it also lets them know something’s coming so they won’t be completely blindsided.

2nd – Be completely real, honest, and transparent: The goal here is not to to pull one over on your child. You’re on their team supporting them and trying to navigate this new world together. Salute both the shadows and the sunshine. They’re both very real for your child.

3rd – Frame the mindset: While the DSM may classify ASD as a “disorder”, personally I don’t like to think of it like that. To me, it’s simply a neurological difference. My brain runs on Mac while most of the world runs on PC. I’m not sure why; that’s just the way it is. This particular operating system in my brain certainly has its pros and cons. For example I might be more prone to anxiety or sensory issues, but on the other hand I can think differently and sometimes solve problems that others can’t. I also tend to obsess over certain things which means I naturally have the mind of a specialist.

The point is, we’re all human. EVERYONE has strengths, obstacles, quirks, and stuff they can improve and work on. Aspergers is no different. It doesn’t define you or change you as a person; it’s simply a quality that can be acknowledged, appreciated, and even celebrated.

4th- Define the scope: We here at Asperger Experts buy into the the “Intense World Theory” which basically states that much of the behavioral and cognitive struggles one traditionally associates with high-functioning Autism largely stem from neurological and sensory overwhelm, which leads to Defense Mode. This is significant because it means that the differences your child is experiencing or struggling with right now are not set in stone. By that I mean if your child struggles with social skills, those can be learned, practiced, and mastered! If sensory issues are difficult we can adapt the environment to accommodate them where possible, and, long-term, learn how to manage them. Or let’s say your child struggles with anxiety. There are innumerable techniques and therapies that have been proven to be very effective in helping individuals learn to manage anxiety and de-stress. Bottom line: with just a few exceptions, almost everything can be overcome or at least effectively managed through patience, knowledge and skill.

What if they don’t like the label of Asperger’s? What if they insist that they don’t have it?

No worries! That’s totally okay. Personally, I don’t see Asperger’s as anything more than a framework for understanding myself. It’s simply a way of categorizing many of my current “self-improvement” projects into one neat little box. Ultimately it doesn’t matter what you call it.

Think of it as a form of verbal shorthand. In the medical community it’s much easier to come up with diagnoses rather than exhaustively listing symptoms one at a time (i.e. it’s much easier for me to say I the flu, rather than saying I have a fever, nausea, a headache, etc). It’s the same with ASD. It’s just a word, a box, that holds a bunch of different behaviors and potential struggles inside it (sensory issues, anxiety, struggling with social skills, etc) So therefore, if your child rejects the box, no problem!

All you have to do is throw the box away and take the things out of it one at a time. Take a more broad, human perspective. Use words that you can both agree on. Everybody has stuff they can work on and improve! Learning new skills and broadening personal horizons is not the exclusive domain of people with a formal diagnosis.

What if I decide it’s best to wait?

Totally cool! That is your decision to make. Whatever you decide, make sure you communicate it to anyone else who knows about your child being on the spectrum. Teachers, administration, and family all need to know and respect your decision about whether your child will have this knowledge now or later.

P.S. If you’re hardcore about prepping for this conversation then I would highly recommend you read a book or two about Aspergers and go through our Deep Into Defense Mode course. Arming yourself with knowledge and understanding of what ASD is and how it works will put you in a great position to answer many of your child’s questions that could come up. It will also give you ample ideas about how you could best support your child in this journey going forward.

A couple of my favorites are:

Autism Breakthrough -Raun Kaufman

The Autistic Brain -Temple Grandin

Journal of Best Practices -David Finch

Reframe your thinking around Autism -Holly Bridges

Pretending to be Normal -Liane Holliday Willey

 

3 thoughts on “Should I Talk To My Child About Their Diagnosis?

  1. Hi, I am just coming to the realization (as I was wondering if my daughters boyfriend had high functioning Aspergers) that my daughter actually has had many of the traits growing up. I had no idea! The last few months, I have become concerned and frustrated by the way my 18 yr. old daughter kind of checks out and becomes a little unreasonable and seemingly immature in her responses to a situation that frustrates her. She just left this morning to relocate to another part of the country. Unbelievable that I did not realize this sooner. And now she is out the door. How do I proceed??

  2. That is so clear, thank you for giving a simple description of clear communication, your basic principles are useful everywhere.

  3. Each child is different – but I told my son then aged 9 – told him no big deal and named all the famous people I could think of who have a similar diagnosis ..its the day he stopped trying to kll himself. Now aged 18 he chooses when to tell people but managing at Uni miles away from home.

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