Should You Disclose Your ADHD?

I first met Dr. Anthony Rostain in 2010. The first thing you should know about Dr. Rostain is that he insists you call him Tony. Tony is a doctor and a professor of psychiatry and paediatrics at the University of Pennsylvania. I’m not going to list all of his credentials and accomplishments, there are just too many.  I will say he is one of the leading lights in ADHD. 

When we met, I was amazed at his knowledge, his curiosity, and his humanity. We sat down together, and I had the privilege to listen to him speak about a wide range of topics, and ask him all kinds of questions.

A few snippets of that interview have appeared in some of our videos, but I wanted you to hear it all. I encourage you to read PART 1 of the interview below, or listen to the audio version here –>.

Keep in mind that the following is a transcript of the first part of our interview – there will be more to come. Also, keep in mind that this is our conversation.

By the way, we’ve edited out almost of my questions as I tend to ramble a bit which actually Tony didn’t mind one bit.

Before we dive into the challenges of ADHD and the strategies to overcome them we talked about the biggest issue that prevents people from even starting to move forward – stigma.

Enjoy,

Rick

The Dilemma of Disclosing An ADHD Diagnosis

Dr. Rostain:
In our in our town, Dan Gottlieb, who does this thing called Voices in the Family, wanted to feature adults with ADHD, and he wanted me to find a patient who would come on.  I literally had to ask about ten people before one of them said sure. 

I said, look it’s no pressure, and none of them said it was about the being in a conversation.  It was all about – I don’t want to be disclosing this on the radio.  I don’t want to be found out. 

So it really made me think about how easy it is to overlook this.  We in the clinical world can think, oh I’m giving you a diagnosis; hey you should feel good about that, right? You should be ready to roll, and let’s get going. But for people to actually have to then not only process what it means to them, but how do you talk about it with people?

In a world that: a) doesn’t buy the ADHD diagnosis – you know thinks it’s like an Oprah, or a Hollywood invention on the one hand, or b) you’re in a job, and you don’t want your co-workers to start looking at you like, hey we’re not sure we can trust you.

If the ADHD diagnosis could be less stigmatizing then, boy the world would really look different, but right now I think of it something that everybody has to consider – how and when are they going to disclose, and who can you tell?

Should You Disclose Your Child’s ADHD?

Dr. Rostain:
Kids don’t have a choice, their parents find out, they tell the teacher, they get this special IEP or whatever they need, they get the meds, but even there it’s stigmatizing.

A funny story I remember, it wasn’t so funny at the time, but I really think about it. This mother came in one day and said, you know I told his teacher and I told the principal, but I didn’t tell anybody else, and I went to pick up my son the other day from school, and one of the secretaries from in the office yelled across the playground and said, “Did you give Tommy his medication today? He really was out of control.”  In front of all of these parents, and the mom was livid.  

So I just said to her, I think this is an important message.  You have to go back to the school and say listen, the fact that you know about my child and that you’re responsible for his education does not give you permission to broadcast it. 

I would say the same holds now, especially for when college students, and some high school students are applying to college.  A lot of them really don’t want it to be disclosed, especially if they’re trying for a competitive school, because they’re afraid that that will be held against them.

So even the decision – will I go for an extended test time on the SATs? or what have you.  Even that decision becomes an issue of disclosure and is subject to, is this or isn’t it’s not going to get me in trouble down the road?

Who Should I Tell About My ADHD?

Dr. Rostain:
So I think on all levels how you talk about it, and who you tell is really important, and I don’t think clinicians spend enough time on that because it’s actually a decision you have to make every day, consciously, or else it’s made for you.

For example. if you don’t say anything, and then suddenly you’re appearing in front of your supervisor, and he’s saying “Hey what’s up here? You’re late with your reports.” What do you do in that circumstance? Do you say at that moment, listen I have an explanation. Or, do you just buy into, “I’m not performing”?

People who don’t say anything, often times what they end up is learning the hard way that they’re not called ADHD, they’re called: underperforming, lazy, careless, unreliable.  Huge. Unreliable. That word is like toxic. And then of course they’re tired of hearing from people they know, like, “You know you really need to remember to take your medication”.  That’s another one of those you know?  On the one hand it’s a mixed blessing, like okay, someone’s watching out for me. They can tell I haven’t taken my medication. But it does kind of put you in the child role.

So, we talk a lot about that too. How do you disclose, and how do you get the person who’s helping you to remember things? To talk to you like an adult, not like a kid who’s just been bad.

Shame, Fear, Stigma and Internal Stigma

Rick:
Stigma comes from fear. Fear of what others might say, but ultimately the person who has the final say is you, and in fact you may be stopped not by just what others say, but what your own beliefs are telling you.

Dr. Rostain:
We’re focusing right now on the stigma of what the world thinks of you. That’s part one of stigma – how does everybody take the diagnosis?  I think that’s why discussions like this are so important, because it demystifies and gets people to understand this isn’t made up, and it’s not an excuse.

On the other hand there’s another stigma which is what I call the Internalized Stigma or, internalized oppression if you want to call it that.  Where you yourself feel like there’s something wrong with me, and I can’t really deal with that.  It’s not really a good thing, it’s not a blessing at all.  It means there’s, you know, I have a brain defect, or I have some sort of brain misfiring that means that I can’t really rely on myself. 

Now we’ve learned over time that people with ADHD develop what we call self-mistrust. Meaning, the feeling that you can’t always trust that what you’re doing is the right thing, at the right time, and with the right outcomes.

Not Just Self-Doubt

Dr. Rostain:
Some people would call it self-doubt, but it goes beyond self-doubt. A little self-doubt is good: Did I really remember to lock the door? That’s a good question to ask. We’re talking beyond that, we’re talking pathologic self-doubting, or self mistrusting where people can’t make decisions.  They can’t even know that what they’re supposed to choose is going to be okay either way.

So they develop anxiety, and this nagging constant sense of – gee you know what will happen here, I don’t really know. This unpredictability seeps in.

So that’s part of the internal stigma, and then the other part of the internal stigma, which is what I call the voices of the past, is that people internalize what’s happened to them. The childhood experiences: being yelled at, being scorned, being rejected, missing good opportunities.

Rick:
Being a straight C student.

Dr. Rostain:
Yeah being a straight C student.

Rick:
Two brothers who were straight A students…

Dr. Rostain:
Exactly!  “I’m not as good.” Right? And so the internal comparer to others, and the reminder that you were never quite measuring up that you keep inside you.

Those voices come back when you start to talk about the diagnosis.  So I generally say to people, listen this may be hard for you, and I try to ask them: how well, how comfortable, how well are you feeling about hearing this news?  Now if the person says – well no it’s actually, it’s hard to hear, but I’m ready to hear it, then that means they’re at the stage of ready to deal with what it means to them.

But some people are not ready to even feel or understand what it means to them. They don’t really want to think about, it or they’d rather just ‘oh just tell me it’s a pill that I need and everything will be fine’, and what I say is, well if you’re lucky, maybe all you’ll need is a pill and everything will be fine – but I’d say that’s only about a quarter of the patients I see, and about three quarters have to start doing. Like a readjustment of what their life has to be.  You have to change habits, you have to change your environment, you might have to change your job. Hopefully you don’t have to change your relationship if it’s a good relationship, but maybe you have to make some changes in those relationships.

Then you have to start looking at yourself.  So I always say the best cure for stigma, and for shame is forgiveness.  If you can forgive the fact that you are human, then you can begin to work on what your type of being human is you know, you’re an ADD human, okay? ‘Okay, I can live with that as opposed to I’m broken, ADD, and I don’t like those.’  That’s the part of the ADHD diagnosis I think is very potentially toxic. That people start to interpret it as – oh my brain is broken, or somehow I’ll never be able to do what I really want to do.  Somehow I’m defective.  No.  It’s, you’re different, you have some challenges but so does everybody else you know it’s just that yours happen to be this way.

We hope you enjoyed chapters 1 – 3 of our interview with Dr. Anthony Rostain. To order the 54 minute audio of all 18 chapters click the image below.

To go to part 2 of this interview click here