So you may be thinking about seeking an autism diagnosis, or maybe you have just been diagnosed. This diagnosis maybe came as a “holy-cow-how-did-this-happen?” kind of shock. (I kept wondering how in the world I was just being diagnosed at the age of 44!) Maybe in addition to being a shock; however, it’s also a relief.
Maybe you’re glad to know what makes you different and what’s been the cause of your struggles. Even so, just after getting this diagnosis, it can feel really, really big and hard to get your head around.
I do hope for you that it’s a good thing. I assume you decided it would be good to know, and that’s why you went to get the diagnosis!
So Now What?
But you’re maybe not so sure what you should do with your autism diagnosis now that you have it.
To that end, I’ve written a post, “I Just Learned I Have Autism. Where Do I Go from Here?” to help you find some first steps. Here, I also want to talk very specifically about who you should tell about your autism diagnosis. In my humble, little opinion this decision is super important!!
Why Is It So Important?
Once you go out and share with people, it’s done-been-shared. There are no take-backs or do-overs. There’s an old legal concept that applies here that once the bell’s been rung, you can’t un-ring it which means that once people have heard something they aren’t going to forget it. Nor are they necessarily going to keep quiet about it.
What you do with this diagnosis is totally up to you until you share it, then it is also up to those with whom you shared.
Should you have to be worried about who knows this about you? Heck No!! It shouldn’t matter other than that it gives you a starting point to identify ways to be more successful. And yet, as a practical matter, proceeding slowly and with caution is a good idea.
Sharing My Autism Diagnosis Didn’t Always Go As Planned
I have to tell you that the autism diagnosis so didn’t bother me that I just told people without really thinking about it. While I now have a blog such that everyone knows, in the beginning, I wish I had been a little more cautious in sharing – at least until I really got my head around it.
In my own life, I can tell you that people who have known me my whole life started speaking more slowly, telling me there were things I could not understand because of my autism, suggesting other fields of employment that might be easier for me, etc. These were people I knew and trusted.
Other people started side-stepping me and going out of their way to avoid me. I wasn’t too sad to see most of this group go. These folks clearly weren’t good for me.
Doctors’ offices that had previously treated me as a competent parent with kids with health problems started questioning my decision making. Really? I felt that medical providers were certainly people who were sufficiently well-educated and intelligent to know that a diagnosis did not change me at all. Not so.
The lesson I learned? People, even really good people, struggle immensely with stereotypes and generalizations, or maybe they just don’t know what to do with this information. While you may be prepared to know this about yourself, others may not be prepared to know it about you. It takes time. You may have to do some explaining and educating. Prepare to be patient.
Does an autism diagnosis mean you won’t have friends or the respect of others anymore? Goodness, no! It is going to help you separate out those who can handle the information from those who can’t, and those who love and care about you from those who don’t. And that separation could happen quickly depending on who you tell and when.
I want you to be prepared. I want you to control this information and choose your process of sharing it with others.
You were so courageous in seeking out this information about yourself! Make sure you use it to your advantage!!!
Not Yet Diagnosed?
Let’s take a step back for just a minute because maybe you are reading this prior to starting the diagnosis process. Even at this very early stage, I want to encourage you to start thinking about this issue. If you tell people you are going through the process, they will want to know the results. They may even somehow feel they have a right to know…?
Even if you are not diagnosed, those who know you went for testing now know that you feel that there is something “different” (I hate that word, but it fits!) about yourself. Not everyone needs to know this about you.
Think about some super private physical medical issue. Would you tell everyone about it? Probably not. And yet, you would still be authentically you. There is stuff that you share and stuff to keep private. YOU get to choose which one this is.
So carefully consider with whom you want to discuss whether you will go through the process.
Just Got Your Autism Diagnosis?
Be True to You…
I will be the first to tell you that getting an autism diagnosis is nothing to be ashamed of and that you should live an authentic real life. Throughout my writing and speaking I have always encouraged people to just be themselves. Because you are enough. Just you.
In fact, I totally believe that if you have autism, getting and sharing your autism diagnosis with the right people will benefit you in so many ways. In spite of the examples above, I know that my diagnosis has enabled me to improve my communication, shore up right relationships, develop better boundaries, and move forward in deciding my career path.
If you have read my post, “Dear Women with Autism: Be “Chameleons” No More. Let’s Get To Know You,” I hope you are already getting to know and like you if you had not done so before. If not, check it out and see if you are struggling to fit in as the person everyone wants you to be, or if you allowing yourself to be you. Know that even as I suggest you exercise caution here, I am totally for you being you!
…While Protecting Your Privacy!
But at the same time, private information is private information. (Again, you probably wouldn’t share a private physical medical condition.) There are people in this world who are more than willing to share your private information with others in ways that can hurt you. Discrimination against people with autism is a real thing. So while I want you to be you, I also want you to love you enough to protect you.
You can be you and still have good boundaries.
I did take a minute to distinguish between keeping this information private and keeping it a secret which you can read about in my post, “Your Autism Diagnosis: Privacy Versus Secrecy and Why It Matters.”
Again, I started a blog so I think it is pretty fair to say that everyone in my world knows of my diagnosis. Other people tell no one. It’s your call, but make informed decisions!
Here are some factors you could consider in determining whether or not tell a particular person or group of people about your diagnosis:
1. Do You Have A Choice?
In most instances the law does not require you to share this information. Check the laws or find professional legal counsel if you are not sure about your jurisdiction. That to say, it is pretty much up to you.
2. Is the Person/Group of People Safe?
If you are not sure what a “safe person” is, you can check out my post, “My GREATEST Struggle As An Autist: Identifying Safe People,” for more information.
Be careful in sharing with groups as one or more individuals of the group may not be safe people. Where possible, decide on an individual basis.
You can look for signs that there may be issues with telling this particular person/group of people:
- Have you seen this person turn on other people?
- Are in a conflict and not sure you are going to continue the relationship?
- Do they have the power to hurt you with this information? Is there a way for them to gain from it?
These are just a few examples, but hopefully give you some guidance of things for which to look.
If you have concerns that the people/persons (or even one person in the group) is not safe, consider not sharing this personal information or waiting to share it until you are sure. You can make all of these decisions when you’re ready.
If you are unsure, consider seeking an objective or professional opinion prior to sharing the information. Your diagnostician may be able to help you here. Again, though, the final decision is yours to make. (I know, I know, I just feel compelled to keep saying it!)
3. Does Sharing with This Person/Group of People Benefit for You?
Is this person/group of people someone who can help you identify/solve a problem?
Is this person/group of people someone who can assist you in attaining a goal?
Is this person/group of people someone in such a relationship with you that the relationship will benefit from the information?
Again, I just want to offer up some ideas of things to think about. You may have other reasons to share with any person or people.
Try to be able to state your reasons for sharing. If you can state the reason, it may save you from later asking yourself what you were thinking when you shared!!
4. Are Their Potential Costs of Sharing with This Person/Group of People?
Here is one of the hardest points: You’re going to lose some people. No matter how carefully you select those with whom you share, some people won’t be able to handle it. Some people won’t be able to handle that you are getting healthier and taking steps to take control of your life. Others won’t be able to handle the autism diagnosis itself. Without regard for the reason these people leave, you will be better off without them. It just won’t feel like it at first.
Discrimination against autists is alive and well. If you have done some reading about autism, what you probably very quickly found is that the information that’s out there isn’t hugely positive. People write about autists, not to them. It’s all about how you’re going to need help and support to survive in this world. Think about how sharing your autism diagnosis may impact the opportunities in front of you. If you feel that doors may close after sharing, consider whether sharing is even necessary.
Again, just some examples, but I encourage you to be able to state the potential costs of sharing so that you know you are making an informed decision.
5. Consider the Context
We talked about sharing within relationships when we talked about safe people, but there are other contexts in which this issue comes up:
School. In some contexts such as school, sharing your autism diagnosis opens the door to things like accommodations which may assist you in finding success more easily. In this context, while you can choose to whom you first disclose the information, the pool of people who know of your diagnosis will grow. The IEP or 504 Coordinator, teachers, intervention coaches, etc., will receive that information as needed (unless you are successful at specifically limiting their access to it via the IEP or 504 Plan – a topic for another day!)
Sharing this diagnosis in the context of school should not hurt you, in fact, legally, it is not to be used against you. Just choose how, to whom and whether you want to introduce the information carefully. If you feel that you (or your student) don’t need any accommodations, there is no need to tell anyone at the school unless you live somewhere it is legally required (I have no idea where that would be!) or you want to.
Employment. While it is also true that sharing the information at work triggers the legal accessibility to accommodations, move forward with more caution here. Employers, like school personnel are not legally permitted to discriminate against you, but, well, it happens all the time. It is a rare employer that knows anything at all about having employees with an autism diagnosis. It may be intimidating for them, it may confuse them, and it may result in them applying generalizations and stereotypes to you that do not fit.
6. Think Short and Long Term
I alluded to this factor above, when I pointed out that you should consider the stage a relationship is in before disclosing this information. Think about where you are today and about what intervening variables may arise in the future that would impact you should you disclose your autism diagnosis.
If your relationship with a friend or close relative is on the rocks, it may be prudent to wait to disclose this information or not share it all. That to say, I am just playing devil’s advocate here so that you stop and think prior to sharing. If you feel it is okay to share, do so, just make a conscious decision first. Remember to factor in that the relationship may change and the potential consequences to you if it does.
In the context of school, for example, high schools handle accommodations differently than colleges. You definitely want to use the accommodations you need, but also always be working to be more independent. If you have disclosed your autism, others may believe that giving you accommodations is helping you and forget that you need independence from them to the extent possible.
Sharing with people you know will encourage you to use accommodations to be forward moving, while still encouraging you to become as independent as possible is important. It can make the transition from high school to college or to work much easier and increase your chances of success!
Or consider at work that you may have a great management team today and feel comfortable sharing, but what if there is a personnel change? The thing here is not to feel like you have to hide your skeleton in a closet, it is just to protect yourself today and in the future.
Again, just some examples to get you thinking!
I am not different from who I was before my autism diagnosis and neither are you! What is different is that we have a little more knowledge about ourselves that we can put to good use. Knowing helped me improve the relationships I want to keep and leave those that were bad for me. I hope it will help you in this manner as well!
Likewise, in my studies and my work, I am better able to troubleshoot, communicate and succeed. I can’t think of a downside I have experienced in having this diagnosis other than a few poor responses from others such as those mentioned above. That to say, I so wish someone shared these thoughts with me as I obtained my diagnosis.
I probably still would have shared my diagnosis with most people, but I would have approached it differently. Maybe more importantly, I would have been better prepared for the responses I received.
So, you are autistic. Now you know. And you are enough. Just you.
Take a breath.
Take your time.
You got this!
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