There exists a large body of resouces already for parents on how to deal/cope with their child's acceptance of a label. This page is dedicated to the decision of disclosing to the child and also to the acceptance of that label—not by the parents but by the person affected by ASD.

One of the questions most often asked of me is about the ASD diagnosis. From parents, who want to know the best way to disclose, from ASD people, who want to know how to disclose, and from professionals who ask how to get an ASD person to accept this thing....

Labels and Labeling:


As I get the chance to work with more professionals, parents and caregivers, I am finding that the topic of labels seems to have two very specific "camps." I am currently working with an ASD specialist who is very clearly against the use of labels in her work. My social skills coach (PsyD) also does not believe in diagnosing or labeling people. My colleague, on the other hand, specializes in assessing people and very much believes that people need to have this label as an entry point to treatment and better health. Additionally, when I poll my adult ASD friends as a group, they 100% concur that having the label empowers them versus hurts them.


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I can see two sides to this topic and believe that for parents it will be a personal choice as to if, when, and how to disclose a DX to their child. I will attempt to give some of the insights I have gained on this from others and my own personal experiences on this page.

Cons of Labeling:


About 7 months after my own DX, I was submitting a patent idea to another senior manager at my company and the discussion of ASD came up. I told him about my fairly recent DX and he asked me how I felt about it. I did not have an answer to that "feel" question, really, but stumbled through it to say that it was what it was. He then asked the million dollar question, "I wonder how much of you being here today presenting this idea to me is due to the fact that you never knew?" How much of me breaking through all the barriers that I broke through had to do with the fact that I lived my life without limits imposed on me by ASD professionals or therapies or the knowledge that I had any sort of disability? To tell you the truth, I don't know, and it is always asked of me by people. I do think about it a lot but it is impossible to say, really.

Recently I chanced upon an amazing TED talk on this topic. In it, there was a woman named Caroline Casey whose parents never told her that she was legally blind. (Can you imagine?) They did it because they felt that labels would dis-empower their child. This talk is very inspirational....

http://www.ted.com/talks/caroline_casey_looking_past_limits.html

Professionals who deem labels dis-empowering usually tell me of experiences they have with young people (since most of them work primarily with young people) "abusing" the label and using it as an excuse to not do or try some thing. (I imagine that many adults may do this as well, but I do not have a lot of experience with this.) They also cite the fact that therapies come from the viewpoint of "disability" or weaknesses and talking about what a person cannot do. They do not want to further promote this via allowing the person being treated to come from the entry point of "disability" or the label. They want a person to approach therapy thinking about the positives, the strengths and the possibilities. At a high level, I think this concept makes brilliant sense. I see a lot of ASD adults who are suffering from a lack of empowerment and/or depression and they tend to make up reasons why good things cannot happen to them. I always encourage these people to approach the problem they are trying to solve from the possibilities instead. This empowers them to see and it isn't until they see these truths that they can take action to work on the steps to get to them.

Pros of Labels and Labeling:

Recently I had dinner with a renowned ASD specialist (professional sort) who was so impressed with my abilities to cater to her whims and needs on our outing that she assumed that my autism was not significant enough to warrant a label. What she did not know or understand was the sum total number of hours and stress that I had put into making that outing pleasant for us both. I had actually driven into the area where we were to meet the night before so that I could acclimate to the environment of the town. Then during the day, I had visited the place where we were to eat and had walked the path to the restaurant several times to acclimate to that as well. The result was that I could be very "social" in her eyes and I could care about her since my sensory processing issues and my anxiety were fairly minimized.

One of the hot topics in the ASD adult community today is the question of what are the Benefits of Adult Diagnosis?

I do not fault this ASD specialist for her assumption that I did not need to be diangosed. Many people might assume that an adult who is working in a job such as mine would not need to be formally diagnosed. Heck, even I assumed this. But a year after the formal DX here is what is happening:

I would have lost my job last year if not for my DX. I am going to receive the very best review of my career this year because of my DX. I have avoided going to the hospital this year for panic attacks, ulcers, high blood pressure and/or physical exhaustion this year because of my DX (this is the first year in my adult life that I have managed this). I was able to ask for help with my finances and actually find someone willing to work with me because of my DX. I am able to go to the doctor now without being ridiculed because of my DX. I no longer have any arguments with any of my friends over things that I do not understand because of my DX. I recently avoided "theft" charges at work because of my DX when I had to quickly exit an overwhelming cafe scene. I could go on and on.... The point is that one does not receive a DX of ASD without the "significant impairment of everyday functioning" part (at least not in my circle).

Having ASD as an entry point to "Karla" makes relationships, jobs and overall life awareness so much easier and more clear.
An ASD label gives me a framework. It gives me permission to take more frequent rests and to lower the expectations I had imposed on myself. Yep. That is exactly the thing that these well-meaning caregivers want to avoid. But here is the thing.... Their way of looking at it assumes that I am a lazy person and that I am seeking the "easy" way out. They use the reasoning that they are saving me from the negativities associated with "disability" and therefore wonder why I am not grateful to them for their care/concern. The thing is, they fail to realize that what they are actually doing is imposing "normal" on me by refusing to let me say that I am disabled. Without the label, I am left to wonder why it is that all the people around me seem to be able to do more than me. They do not get as tired. They do not go to the hospital for exhaustion. I am left to feel like an idiot because I have no awareness of my limitations. I am left to feel like a failure because there is no excuse. The "excuse" is important to my life. It is important to the quality of my life. So far 100% of the ASD adults I talk to agree.

Do kids use this sometimes when they should not? Do adults use this when they perhaps should not? I don't know, to tell you the truth. I like to believe that people are largely wanting to do well, to succeed and to be valued. I believe that if someone is using their label to get out of something that they actually need to do that. Even if I do not quite understand or "feel" the reason why....


Acceptance: (Not parents accepting that their child is disabled, but the person themselves accepting)
Crash Course on Acceptance of ASD Label
Stages of Grief of Label Acceptance (yep, I did these)
http://www.youtube.com/watch?v=qguNB4b36Vo&feature=related (fantastic short clip of Dr. Barkley describing ADHD adult DX emotions... yep)