Talking About Autism: Personal Journeys

Autism in the Adult

Join Dr. Regan for this first episode of the new series "Talking About Autism." This episode focuses on talking about autism when you are on a journey toward diagnosis and after you have received a diagnosis.

New Course for Clinicians - Interventions in Autism: Helping Clients Stay Centered, Connect with Others, and Engage in Life

New Course for Clinicians: ASD Differential Diagnoses and Associated Characteristics

Dr. Regan's Resources

Book: Understanding Autism in Adults and Aging Adults, 2nd ed

Audiobook

Book: Understanding Autistic Behaviors

Autism in the Adult website

Resources for Clinicians

Read the transcript:

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Hello and welcome to this episode of Autism in the Adult.
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I am your host,
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Dr Theresa Regan.
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I'm a neuropsychologist.
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I am a certified autism specialist,
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the director of an autism diagnostic clinic for adults in central Illinois, and the mother of a teen and the spectrum.
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I am starting a new series of episodes today.
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I think this may end up being a 3-4 part series.
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We'll see how it goes.
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Um and basically the series is going to be called "Talking About Autism."
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And this was a listener request... from multiple listeners that have emailed about "How do I talk about this to other people,
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whether that's my own diagnosis,
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whether that's talking to people that I think may be on the spectrum,
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but they haven't been thinking in that direction... and how do I navigate all the emotion that sometimes comes with these kinds of discussions?"
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So we're going to take some time to sort through some of those topics.
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I believe that this topic is really important, and that's why I have set aside to do a series of episodes about the topic.
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I also feel like this is probably one of the most challenging episodes that I've put my mind to here.
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And that is because in some ways it's a lot easier to present some research and a list of facts and definitions of terms than to talk about these concepts and experiences and to wrap words around things that are perhaps more personal or experiential is a little more challenging, but worth it I think...
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but challenging.
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And one of the challenges is probably to make some organization of it.
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... So there's some cohesion in what we're talking about in each episode.
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So in this first episode,
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I'm going to cover the topic of talking about your own autism diagnosis to other people,
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and I'm going to cover two things.
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One is if you're an individual who's thinking about starting a journey toward evaluation, and you're talking to people about your desire to do this,
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um,
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some of what we review will have to do with this kind of process ... this starting of that journey.
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And also,
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then we'll finish by talking about once you have a diagnosis,
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um,
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who do you talk to about it?
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How do you bring it up?
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Um,
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how does that go after you have a diagnosis?
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Um,
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so we're going to jump in first with that process that perhaps you're someone who's been thinking about yourself or been thinking about,
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um,
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perhaps your loved one,
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Maybe your partner has been thinking about this and wants you to join them in this journey or you have a child or adolescent that you think may be on the spectrum.
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And,
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and this is just the beginning of a quest to figure out more information.
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One of the really unusual things I think about autism as a diagnosis is that for some reason,
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and I don't really understand why, everyone really seems to have an opinion about this topic as far as whether you actually are or are not on the spectrum.
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And it's,
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again,
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mystifying to me because it doesn't seem to be based on any professional qualifications.
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Um,
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you know,
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I think someone that you see at the grocery store seems just as adamant about that as your grandmother,
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who's just as adamant,
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um as your therapist and so forth.
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Um it's mystifying in the sense that if someone told me they had a cardiac uh difference that was causing some arrhythmia or whatever,
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I would never think to say no,
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you don't.
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I'm not a cardiologist.
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I don't know if you do or not,
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and um,
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that just doesn't carry over to this neuro behavioral developmental condition.
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So,
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autism is a physical, neurologic state where the genetic code and the process of development of the brain has produced this less than typical neurology.
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So 2% of people
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in our population, and that is a percentage that's pretty stable across age groups,
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across country,
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across research study ... that 2% of people will present with this neurology.
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And so it's not very common.
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Um,
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and yet everyone seems to feel like they could recognize it... and I'm not,
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I'm not sure where that comes from,
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but that will probably be something you encounter if you say "I've been wondering if I'm on the autism spectrum" or "I've been wondering if my child is on the autism spectrum."
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And you'll probably get some immediate responses from people that that is not the case.
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And that could range from,
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you know,
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the physician that you see.
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It could be a therapist.
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It could be any range of people.
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The reason that I bring up this type of encounter is that I think it's often not very helpful because it's non specific.
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Um there's often not a reason given and it's not really based in data,
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it's kind of based on this general gut feeling or what people expect autism to look like in their neighborhood or their family or their classroom or whatever.
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Um,
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but it's not really based on substance.
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And one of the ways that I have found to kind of defuse that or at least ask for some substance is to say in response to that,
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"Oh,
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okay.
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What criteria don't you think I meet?"
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And whenever I've said that,
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I've never had anyone who knew the criteria that actually were responding to that or giving this input that autism is incorrect.
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Um so again,
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unusual that people feel that strongly about it,
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um,
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and will produce that,
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um,
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that opinion.
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But you can kind of diffuse that if you ask them for more specific data,
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more specific information,
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um,
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you can kind of point out ... and sometimes it's been interesting.
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So,
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you know,
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one person might say to me well I'm a counselor and I'll say,
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yeah,
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I know... a lot of people don't know the criteria though.
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So what criteria don't you think this person meets?
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And then she said,
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well,
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I guess I don't really know the criteria.
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So it just helps diffuse that.
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And I wouldn't recommend,
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you know,
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going in guns blazing or anything,
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but just in a very matter of fact,
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calm way that you'd like their input if it's based in the data,
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what kind of observations are they using to say that,
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you know,
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Another comment that I find non specific and I find this comment to be kind of dismissing
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I guess of someone's journey that they're taking toward an evaluation and what can happen unfortunately is the person will say,
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"Well,
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why do you think that?"
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And you'll start to share some of your thoughts and experiences and then you're a bit trapped because they may say,
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"Oh yeah,
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but I do that too.
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And I'm not autistic,
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everybody does that."
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Um and it just doesn't leave you in any better place than you were.
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Again,
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it doesn't add anything of substance.
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It doesn't clear anything up.
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Um And so one thing I find helpful to mention in this kind of dynamic would be to say,
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"Well,
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that would be like saying that because we all forget things that Alzheimer's dementia isn't really impactful to people, and something may be impactful to an individual because of how frequently it happens or how much distress it causes.
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Um So,
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so that's the thought process I'm using about my own experiences in the end.
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I would never have your goal be ah,
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to convince everyone that you come in contact with,
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that the journey is relevant.
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I think that autism is just such a misunderstood concept that you're going to have people who just are not in the same place that you are, and to go back and forth feeling like your role is to convince people,
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um,
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is probably not,
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um,
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not a role that really brings fruit.
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And so I would consider letting go that agenda if that's your goal,
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that you'll be able to convince everybody.
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And interestingly,
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as with other complex life situations,
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what I find personally is that sometimes the people I expect to be there for me in this situation,
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whether that's a celebration or whether I'm grieving about something,
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um,
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a wedding,
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a funeral,
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uh,
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a promotion,
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a move ... sometimes I expect,
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you know,
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these closest people to be really with me and a lot of times that's not necessarily the case and we may like it to be that way,
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but in life I just find that there will always be people that step up that surprise you.
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Like,
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wow,
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I wouldn't have expected you to be the one,
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you know,
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to kind of step up and meet me in this place.
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But I did expect this other person to be able to support me and they're really not able to do that.
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So sometimes the journey does involve letting go of some expectations and giving other people the freedom to be in a different place,
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allowing yourself to grieve that you're not on the same journey that everyone else is ... that other people don't appreciate that part of your journey.
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Um but not getting into the trap of trying to convince people who just aren't really there.
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Another comment that I feel is dismissive and very general and non substantive is a comment people make ... I suppose to be um supportive,
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but it dismisses some of the complexity of the journey,
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I think.
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And that is the comment I hear a lot,
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which is,
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"Well,
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I guess everyone's a little autistic these days.
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Apparently we're all autistic."
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You know,
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that kind of comment.
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Um actually 2% of individuals meet full criteria for the autism spectrum.
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Um,
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so it's not this popular fad that everyone's getting diagnosed with.
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Um I think there's a lot of emphasis on diagnosis now because we're realizing how many people have been missed or misdiagnosed.
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Um,
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but everyone's not autistic.
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Uh this is an unusual neurologic pattern.
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It's unique.
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Uh it's not that common and it's really worth paying attention to and realizing,
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you know,
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when that's present.
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Some people will advise that you don't pursue the journey of evaluation based on their premise that the diagnosis won't make a difference anyway.
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And I've heard that from physicians,
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from psychologists. psychiatrists, teachers,
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um,
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all kinds of people.
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So I don't think it's really specific to any group of people or generation,
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but I think it's just a revelation that in our culture... in our communities... we're really not to the point where people understand what a difference it does make and what a difference it should make.
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So um if someone says that ... that probably,
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well I would say it does reveal that they don't understand the neurology of autism well enough that they can really comment on your situation.
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And again it may be your psychiatrist who doesn't or ... and it's not um a criticism of any one person.
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I'm just commenting I think on the state of our community as far as our awareness of what the neurology looks like,
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what impact it has on you or people around you and all the things that do make a difference about knowing that.
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Um So it should direct our expectations,
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our goals,
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our understanding of the why of behavioral patterns,
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how to get the best outcomes,
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how to support each other.
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Um because at a very basic level when you're going on a journey to um have an evaluation for autism,
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you're trying to figure out if your behavioral patterns in certain areas reflect neurology or whether they reflect more traditional mental health issues.
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And I know that those two categories are not clean cut categories but for the purpose of this basic discussion,
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I'm going to point out those 2 categories.
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So I'm going to give an analogy that I hope will demonstrate why it does make a difference to understand if parts of a behavioral pattern have a neurologic base.
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So let's consider that a psychologist has two clients coming in that day and they both have the same concern.
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They both have a memory concern, and the psychologist could think,
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"Well it's the same concern.
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So I'm just going to use the same treatment for both patients since we're really just wanting to improve memory regardless of the reason for the memory difficulty."
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Well,
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let's say,
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another psychologist has the same thing.
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They have to people coming in but they decide,
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you know,
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it really does matter what the reason is.
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And so I'm going to do an assessment to see -- why are these people having memory difficulties?
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And the first client of the day,
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the psychologist does the assessment and they see a cognitive pattern that's very classic for an alzheimer's dementia,
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which means that the hippocampus is not functioning well,
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there's a disease process here.
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It really looks like it's going to be degenerative, and the memory loss is very based in neurology.
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And the second client who comes in,
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the psychologist does the assessment and realizes after the evaluation that their memory loss is due to traumatic experiences... that they've had so much trauma in their life that they're dissociating,
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that they are shutting down their awareness in order to just go on autopilot and that's why they're losing chunks of their day and they forget parts of their childhood and their mind is just not online all of the time because it's trying to protect itself from all these strong emotions.
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So at a basic level the treatment needs to be different ... the conceptualization needs to be different, and the support that we offer people needs to be different - based on whether there's been this more mental health path to these symptoms or whether there is some neurologic base.
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So I'm not going to recommend that the Alzheimer's patient come into psychodynamic therapy every day to work on trauma work so that their memory will improve.
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I need to understand what the base of the concern is.
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So I understand what's likely to be helpful,
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but I very well may recommend that the second client engage in trauma work,
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whatever that looks like.
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Uh and that should help this pattern of dissociating and help her be more aware and present psychologically in the moment and cut down on that loss of memory. Now,
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certainly Alzheimer's and autism are not the same,
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right?
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Autism is developmental and Alzheimer's is acquired.
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Alzheimer's is degenerative,
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it gets worse.
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Um and autism is based on how the brain was wired during development.
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It's not a degenerative process,
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but you can see this general concept of figuring out if there's a part of something going on that's neurologic versus more traditional mental health issue, and so I feel ... I feel like that in itself can be a really important part of the journey toward figuring out if autism is present.
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So let me offer one additional example in this ... ,
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I'm going to take little Johnny who's in kindergarten, and mother comes to talk with the teacher and gets to hear that "Unfortunately, Johnny is really struggling with his color recognition, and all of his peers are really taking off on recognizing colors and naming them and organizing them into hues and patterns.
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And boy, little Johnny is not up to speed in that area.
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And so what the teacher recommends is that she's going to repeat, for Johnny,
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why it's important to work hard to learn his colors because it does impact various parts of his life.
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So explaining ... a lot of explanation of why this is important.
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She's gonna ask Johnny if ...
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if he agrees that this is an important thing, and he says yes. And so she's going to add extra homework, extra tutoring about color recognition.
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She's going to ask the parents to give extra work and help him at home and maybe set up um a prize versus consequences kind of thing.
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Like if you can advance in this area up to your peers,
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you can get this extra present.
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But if you can't, then you can't go on the trip at the end of the year with your class.
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So they've set this whole thing up, and every year,
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the same thing is repeated.
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Boy, Johnny needs to work harder on his color recognition. By middle school,
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Johnny has this learned hopelessness...
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That no matter how hard he tries,
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he's always falling short of people's expectations in this area.
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And instead of being shamed and embarrassed about it anymore,
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he starts to say,
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"You know what?
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It's because I don't even care about colors,
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I don't care about this."
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And there starts to be this really difficult dynamic now between Johnny and his parents and his teachers,
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a lot of strain,
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some acting out. And all of a sudden, in middle school,
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someone thinks to see if Johnny is colorblind. Lo and behold,
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he has color blindness, and all this time we've been telling him to work harder.
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We've been lecturing him about why it's important to do better.
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We've been asking him if he agrees that it's important.
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Um,
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We've been tutoring him, all to no avail, and here we were asking him to do something he's not capable of doing at the same level as his peers.
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And that is a difficulty because we've really uh,
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set up this expectation.
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He has this learned hopelessness that he just can't meet people's expectations.
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The relationship between him and the teachers and the parents has become very strained and it could have been avoided if we understood that there's really a physical limitation that his eyes just can't process that information.
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So asking him to work harder is not going to be something that is helpful.
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It's not going to bring about a better outcome.
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In fact it's making things worse.
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So now let's say you have gone on this journey and you do have a diagnosis.
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Um One of the questions that people then ask is well,
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you know,
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I don't ... I don't know who I want to talk to about this.
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Do I have to tell everybody?
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Um In fact some people may say I don't even want to go on that journey toward evaluation ... because my partner wouldn't understand that diagnosis.
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And in reality... this is part of your medical record,
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part of your um diagnostic history that you do not have to share with people outside of your medical care.
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So if you have a partner,
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you do not have to reveal that to them.
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If you don't want to tell your family,
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if you don't want to tell your teachers,
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you have discretion about who you reveal too.
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And I am speaking to you about the interpersonal aspects of revealing.
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Um I'm not giving any legal or policy advice on anything about revealing in certain situations.
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But interpersonally,
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you don't have to reveal everything about yourself to every person in your life.
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There may be reasons that you may decide to discuss your diagnosis with someone or some group of people.
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And one of the reasons may be that you may want to explain who you are and how you're wired and what your needs are to other people and that may make life just easier with them.
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And you can make the explanation nonspecific or specific.
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And what I mean by that is you can use the word autism or not use the word autism,
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but in some instances you might want to say,
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you know,
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I've really learned that my system needs X,
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y and Z to feel calm.
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So I'm gonna go take a break now,
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if that's okay with you,
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or you might want to say,
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you know,
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I've learned that I kind of miss sometimes what my friends need.
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And so,
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you know,
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if you said something and it's just gone over my head,
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please tell me again,
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I really don't want to miss what your needs are.
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Um,
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so that's kind of a nonspecific way without using the word autism,
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that you can share what you've learned about yourself in that context and that could make your relationships,
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um,
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really run more smoothly.
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Another reason that someone may want to discuss their diagnosis may be that they might want to be someone that advocates for people on the spectrum,
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that they might want to be part of creating an atmosphere that normalizes discussions about autism and that supports autistic individuals.
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So they may decide that part of their own journey as personal to them,
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that that may be part of how they approach things,
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at least during a season of their life.
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Um,
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so,
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in an effort to create an atmosphere of discussion and inviting discussion and advocating,
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they may give this personal kind of,
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um,
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revelation to people about their own experience,
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what they've learned,
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how they can help support individuals on the spectrum.
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I had a situation come up like that in my own life,
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after my son had been diagnosed at the age of five at our local easter seals and I was at a Children's event and my son was out there,
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um,
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taking a certain kind of lesson in a group and another mother was sitting next to me and I had seen her son there a few times before and in watching his behavior
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I did think to myself,
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I wonder if his parents know he's on the spectrum.
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It was pretty clear to me,
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um,
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for a variety of reasons... and one day she just happened to be sitting next to me.
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We hadn't sat next to each other before and she,
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I actually just said to her,
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how,
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how's your son enjoying this?
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00:28:01,540 --> 00:28:07,720
I asked about how he likes school and my intention was not to bring up the,
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the diagnostic issue.
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00:28:09,360 --> 00:28:11,700
My intention was just to be polite.
350
00:28:11,710 --> 00:28:13,880
So how does your son like school?
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What is he like best?
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How you know?
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Um,
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00:28:16,890 --> 00:28:18,930
and in that process,
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she said,
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oh,
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00:28:20,060 --> 00:28:21,550
he's doing really well,
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he's a little behind with some social things,
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but I'm sure that will mature quickly.
360
00:28:27,540 --> 00:28:28,010
Um,
361
00:28:28,010 --> 00:28:31,470
and then she said a really,
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there was a really pivotal moment for me and I was caught off guard and she said,
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actually,
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00:28:39,160 --> 00:28:45,260
his teachers had the gall to suggest he's on the autism spectrum.
365
00:28:46,340 --> 00:28:54,110
And I had that kind of moment where you feel like everything sits still and things are moving in slow motion.
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00:28:54,110 --> 00:28:54,740
But you know,
367
00:28:54,740 --> 00:28:56,670
you have to respond or,
368
00:28:56,680 --> 00:28:59,360
or your mind is trying to think of something to say.
369
00:29:00,740 --> 00:29:02,930
And I thought to myself,
370
00:29:02,940 --> 00:29:14,860
I know I don't have to talk about our experience with her, and I'm not feeling very generous in this moment,
371
00:29:15,440 --> 00:29:17,300
but I said,
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00:29:17,300 --> 00:29:17,610
you know,
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00:29:17,610 --> 00:29:19,280
if I don't say anything,
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00:29:20,430 --> 00:29:25,350
I feel like I'm going to be agreeing that this is not something we can talk about.
375
00:29:26,340 --> 00:29:29,440
And that's not what I believe and that's not the atmosphere
376
00:29:29,440 --> 00:29:35,280
I want to create ... that if I don't reveal our experience,
377
00:29:36,140 --> 00:29:40,760
I am agreeing that it takes gall to suggest that.
378
00:29:41,940 --> 00:29:44,160
And I also didn't want to shame her.
379
00:29:44,740 --> 00:29:47,430
I know what it's like to be a struggling mom.
380
00:29:48,140 --> 00:29:48,770
I don't,
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I'm not,
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00:29:50,120 --> 00:29:52,990
I wasn't in the same place that she is,
383
00:29:53,540 --> 00:29:57,100
but I did not want to wound her or shame her.
384
00:29:57,330 --> 00:30:03,060
And so I ended up saying in a very matter of fact tone,
385
00:30:03,070 --> 00:30:03,390
"Oh,
386
00:30:03,390 --> 00:30:05,120
my son's on the spectrum.
387
00:30:05,130 --> 00:30:08,580
We got diagnosed at easter seals and you know,
388
00:30:08,580 --> 00:30:10,670
that was one of the best things we ever did.
389
00:30:10,680 --> 00:30:14,650
His therapies were so helpful and you know,
390
00:30:14,650 --> 00:30:17,800
that was really something that was good for us."
391
00:30:19,040 --> 00:30:21,120
And then I just said to her,
392
00:30:21,130 --> 00:30:21,640
"You know,
393
00:30:21,640 --> 00:30:26,910
whatever your son needs to be doing well and uh,
394
00:30:26,920 --> 00:30:28,660
feeling good and connecting with people,
395
00:30:28,660 --> 00:30:31,060
I just hope he gets that ... whatever that is."
396
00:30:33,540 --> 00:30:39,960
So sometimes we make decisions about revelation based on what kind of atmosphere we want to promote.
397
00:30:43,690 --> 00:30:49,760
Sometimes we might want to discuss our diagnosis to formalize something in a record,
398
00:30:50,140 --> 00:30:58,650
like a medical record or a school or work record where we're asking for specific accommodations or we're asking,
399
00:30:58,660 --> 00:30:59,350
um,
400
00:30:59,740 --> 00:31:00,530
for,
401
00:31:00,540 --> 00:31:01,390
uh,
402
00:31:01,400 --> 00:31:03,000
an intervention like,
403
00:31:03,010 --> 00:31:03,580
um,
404
00:31:03,590 --> 00:31:08,250
occupational therapy or something that's going to be directed towards that need.
405
00:31:08,250 --> 00:31:10,420
So sometimes we'll um,
406
00:31:10,430 --> 00:31:17,170
discuss that with a team of people working on giving us specific interventions or accommodations.
407
00:31:19,140 --> 00:31:23,410
And we also may wish to help someone specific.
408
00:31:23,420 --> 00:31:25,470
So maybe we've,
409
00:31:25,480 --> 00:31:26,070
you know,
410
00:31:26,080 --> 00:31:29,990
we've revealed the diagnosis to some people close to us,
411
00:31:29,990 --> 00:31:38,270
but most people don't know, and you run across someone that's really struggling, and you really think you get it.
412
00:31:38,340 --> 00:31:39,020
You know,
413
00:31:39,030 --> 00:31:47,170
you think I know what that is and I was so helped by this that maybe my experience might help them.
414
00:31:47,540 --> 00:31:57,850
So you may choose in that moment or with that person to kind of talk about your own experience of diagnosis and why that made a difference for you.
415
00:31:57,850 --> 00:32:00,800
And you might say something like,
416
00:32:00,810 --> 00:32:01,220
you know,
417
00:32:01,220 --> 00:32:03,330
"I don't know if that's anything you've considered,
418
00:32:03,330 --> 00:32:05,160
but it may be something to think about."
419
00:32:08,140 --> 00:32:17,360
And the last reason I'm going to put out there is just that sometimes when you are in an increasingly close relationship,
420
00:32:17,370 --> 00:32:20,450
whether it's a friendship or um,
421
00:32:20,460 --> 00:32:22,040
a partnership,
422
00:32:22,050 --> 00:32:23,560
a romantic partnership,
423
00:32:24,540 --> 00:32:26,100
part of growing closer,
424
00:32:26,100 --> 00:32:27,180
over time,
425
00:32:28,140 --> 00:32:28,670
you know,
426
00:32:28,670 --> 00:32:31,400
maybe you've connected over favorite interests,
427
00:32:31,400 --> 00:32:33,470
maybe you've connected in a group,
428
00:32:33,480 --> 00:32:39,260
maybe it's been a year and you're getting closer and (the time frame isn't important,
429
00:32:39,260 --> 00:32:53,170
I'm just trying to emphasize that there's been this growth together) ... And part of encouraging even more intimacy and closeness is self revelation.
430
00:32:53,640 --> 00:33:03,440
So you start to reveal over time things that have really impacted you or things that you've been through and what your journey has been like.
431
00:33:03,450 --> 00:33:09,350
So someone might share with their increasingly close friend what it was like when their mom died.
432
00:33:09,840 --> 00:33:15,060
Or someone might share their diagnostic journey towards an autism diagnosis.
433
00:33:15,440 --> 00:33:23,280
So sometimes it's part of this growing intimacy that self revelation brings whatever that revelation is.
434
00:33:23,290 --> 00:33:27,770
And in this case it could have to do with the diagnosis of autism.
435
00:33:30,140 --> 00:33:34,760
Those are my scattered thoughts um,
436
00:33:34,770 --> 00:33:42,800
about talking about a journey toward diagnosis or an existing diagnosis with other people.
437
00:33:42,810 --> 00:33:48,300
And I hope that these have provided some food for thought.
438
00:33:48,310 --> 00:33:48,930
Um,
439
00:33:48,930 --> 00:34:07,440
some examples of things that you might say or might avoid or might consider. The next episode is going to focus on bringing up the conversation or the topic with people that you think may be on the spectrum that you'd like to help,
440
00:34:07,450 --> 00:34:10,520
but they really don't see this coming.
441
00:34:10,530 --> 00:34:12,660
You don't ... you're not sure how they're gonna react,
442
00:34:12,660 --> 00:34:13,850
You don't know what to say.
443
00:34:14,240 --> 00:34:19,260
So that will be this next episode and the final episode,
444
00:34:19,270 --> 00:34:25,260
I envision being about dealing with strong emotions um,
445
00:34:25,270 --> 00:34:28,280
in conversation about autism.
446
00:34:28,280 --> 00:34:34,110
So one of the things I've really experienced and learned is that people have strong,
447
00:34:34,110 --> 00:34:39,540
strong emotions for a variety of very legitimate reasons.
448
00:34:39,550 --> 00:34:42,310
And sometimes dealing with the emotions
449
00:34:42,310 --> 00:34:48,550
in the conversation can be even more difficult than figuring out the words to say.
450
00:34:48,940 --> 00:34:49,560
Um,
451
00:34:49,560 --> 00:34:54,410
and sometimes you never know what kind of emotion is going to come on the scene.
452
00:34:54,420 --> 00:34:55,260
Um,
453
00:34:55,270 --> 00:35:03,890
and so I'm going to kind of focus on this emotional exchange during the third episode of this series,
454
00:35:03,890 --> 00:35:05,860
Talking About Autism.