In today’s digital age, we have an incredible amount of information at our fingertips. However, when it comes to understanding our own neurology, this constant stream of content can sometimes do more harm than good. It is a source of distress to see how the seriousness of an autism diagnosis is frequently misunderstood in the era of search engines and social media.
We are seeing a trend where someone goes online to a platform like TikTok, reads a generic checklist of traits, and suddenly announces to their friends that they are autistic. This casual approach overlooks the complex realities of neurological development.
The Danger of the “Relatable” Checklist
The problem with relying on a simple checklist is that nearly anyone could make a case for being autistic if they only look at isolated experiences. We can all remember a time when we had trouble making friends in a new situation or struggled to understand a social expectation. But a collection of relatable quirks does not equal a neurological divergence.
Autism is a serious diagnosis that requires a serious, thoughtful response. When self-diagnosis becomes trendy, it inadvertently dismisses the very real, hard work that autistic individuals and their parents are doing every day to build flexibility, integrate their brains, and plan for the future.
What a True Assessment Looks Like
A proper diagnosis cannot be made by simply checking boxes on a parent report without a professional ever truly observing the individual. I recently worked with a young man who carried an autism diagnosis for years based solely on an early checklist. After a comprehensive, face-to-face evaluation with a top professional, it became clear he did not have autism; he had ADHD.
A thorough evaluation looks broadly at a person’s life and functioning. A professional must ask:
- What does the home life look like?
- How is the individual interacting with siblings and parents?
- Is there joint attention?
- What is the state of the guiding relationship?
The Double-Edged Sword of the Word “Diagnosis”
Many people naturally dislike the word “diagnosis” because it carries the threat of being pigeonholed. A label should never mean that a professional claims to know everything about who you are or ignores your unique potential, interests, and desires.
However, we also recognize the practical reality that a diagnosis is often necessary to navigate insurance guidelines, the DSM, and CPT codes. It is a tool to unlock the services and help that a person needs.
Moving Beyond “High” and “Low” Functioning
If we must use a diagnosis to get support, we must also discard the labels that hold our children back. Terms like “high functioning” and “low functioning” are entirely unhelpful. These labels create a false sense that the future can be predicted, which is simply not true.
Using these restrictive terms takes away the individuality and uniqueness of the person, pigeonholing them in a stereotypical way. At RDI, our goal is not to predict the future based on a label, but to celebrate neurodivergence while providing the guidance needed to overcome life’s obstacles. We want every individual to have the opportunity to seek growth and thrive.
Learn More and Get Connected
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Full Transcript
Kat Lee: Welcome back to Autism, A New Perspective, the podcast show where we help you understand what is going on in the mind of your child. And we always encourage you that growth for your child is possible. I’m Kat Lee, and in this week’s podcast, Dr. Rachelle Sheely visits with us about autism, the autism diagnosis, and what you need to know. Let’s listen in. One of the reasons you and I want to talk about this is to help people, whether they’re a teenager or a young adult or an older adult, as the case may be, who’s searching, who’s wanting to know just more about themselves, what’s going on with themselves. What should they do?
What should they not do? I’m concerned about information and information sources and people not getting the help or the information that they need.
Dr. Rachelle Sheely: Such a good question. And I think it’s an area that causes me a lot of distress, for lack of a better word. And the reason it does is that I feel like people are not understanding the seriousness of the autism diagnosis, that it really is a difference in the way the neurological system stores and processes information.
And so when someone goes online to TikTok or whatever, and they see a checklist, have you ever, have you ever, have you ever, oh, all the time, and now suddenly they tell their friends, by the way, I have to, I have, I have autism. The problem with this is that you and I could both make a case that we have autism. And the way we would do that, we would remember a time when we had trouble making friends in a new situation, or when someone, my mother said, look at me, because in our family, look at me meant you’re in trouble, you look at me right now, but those kinds of things.
So we all have experiences that we could say, we could take those isolated experiences and make the case that we are dealing, we have always dealt with autism. That’s not true. That’s just not true.
And to really think about how this, how diagnostically this gets made, I think it’s important to talk to a professional, to see a professional who knows how to do the diagnosis in depth, and to do that diagnosis in depth in a way that rules in or rules out. I recently was dealing with a young man who had been given the diagnosis when he was very young. The way the diagnosis was given to him was that parents received a checklist, they checked things off.
The professional never really saw him. It was all parent report. And by the time I saw him, he was a young man.
And there was nothing about him that indicated to me that he was on the autism spectrum. So I talked to him about it and explained why I was concerned with the diagnosis because he had heard it so much his entire life. He was assuming things that I just didn’t see were true.
So I had him, I went to one of the top people here in Houston, and without telling her anything, I asked him to go get a diagnosis. And she came back and said, you know, I see some ADHD here, but I do not see autism. You can imagine the shock.
And if that diagnosis had been given to him in the way it should have been, in a thoughtful, careful way, looking at not only a test and parent report, but face on, what does this relationship with the parents look like? Is there a guiding relationship? Is there joint attention?
That diagnosis, I’m convinced, he would have never been given that diagnosis. So for that reason, I think sometimes people are overdiagnosed, some are underdiagnosed. But it is a serious diagnosis and it requires serious response from the parents, the person who’s experiencing it, and the professionals in the child or young person’s life.
Kat Lee: How do you advise someone who’s searching? Because I think, and I hate to say it like this, I think we need to not depend on a search engine AI. You know, tell me, and I’m not, I wish I was joking in some ways, but at this point I’m not.
But you can just look about anything up now quickly and get lists. And for that reason, as you said, when we started, it’s a deep concern where I’m worried that people who need help won’t get the help they need, and I’m worried that people will receive information that actually cuts themselves off from what they need and won’t go further. And I know you have the same concerns.
This is why we’re talking about it today.
Dr. Rachelle Sheely: Now, the problem is that people who have autism have areas of vulnerability that these people who are thinking it’s fun to get the diagnosis, I mean, I’m telling you, I’m saying that seriously. They seem to think trendy and fun to have the diagnosis, but these people have a lot of serious things going on. And it really doesn’t give them the thoughtful response that they need and that they require and that they deserve.
There are people who don’t think it’s trendy or it’s fun. They’re doing a lot of hard work. Their parents are doing a lot of hard work.
They’re doing things to help them become more flexible, for their brain to become more integrated, for them to see the future and plan for the future and figure out how to reach their potential. And it’s bothersome to me that now autism isn’t taken as seriously as it needs to be taken. I don’t want to talk about, I’m not talking about acceptance.
Of course, of course, acceptance is a key principle to autism. Stephen Shore, you know, an adult who has autism, talks about acceptance all the time. But acceptance doesn’t mean that we overlook areas where guidance could be helpful.
And we also don’t joke about being socially inept or something like that. And that’s what I’m seeing. And it really bothers me.
There is a way to get a diagnosis and it’s thorough and it looks at a lot of things. There’s testing that people do. There’s standardized testing that people do.
But then there’s the other thing that needs to be looked at. What does the home life look like with someone who has autism? How is that person interacting with the siblings, the parents, the cousins?
And what happens at school? What does that look like? You start looking broadly at someone’s functioning and you can give a really good, helpful diagnosis that says, I see this particular thing, but honestly, I don’t think it’s something you need to work on.
These are the areas that I think would be helpful. And if people are not looking at those things when they give the diagnosis, it’s a huge problem.
Kat Lee: What do you say to someone who doesn’t love the word diagnosis? Because I have read some things about that and it’s an interesting thing to say to me. I’ll just leave it there.
What would you say? You have been helping people for, well, your whole life. And so I think that you’re so wonderful to talk about why that word can be important to someone.
Dr. Rachelle Sheely: Well, I would say, someone said to me, I hate the word diagnosis. I would say, so do I. I mean, I understand, of course.
I mean, who wants to be pigeonholed? And I think the problem with when we use that word diagnosis, we’re saying, I know who you are. I know how to treat you.
I know how to pigeonhole you. And so I’m not going to look at your potential. I’m not going to look at your interests.
I’m not going to look at your desires, what you would like to do in the future, saying, oh, I have a diagnosis. It explains everything, which of course it doesn’t. I think I dislike it so much that when Steve and I began seeing people, we used to call it different things.
I mean, I look out there now and I think, why did we do that? So I don’t like the term diagnosis. But I also understand that if people want help in certain areas, there are CPT codes, there’s the DSM, and there are insurance guidelines.
And we need to have a diagnosis to get the kind of services that can be helpful. So I don’t like it either. I agree.
Kat Lee: But I knew you would explain that so well, that it’s about getting the help you need if you need it. And that’s one of the things that I love about RDI. You know, I don’t hold back on that.
Is your celebration of neurodivergence, your celebration of people, their strengths, their exceptionality, their uniqueness, their identity. From the beginning of my relationship in RDI, you all have been prominent in talking about, as Dr. Gutstein, talking about people as people, which we all laugh about because it makes sense. But, you know, just the individual unique person.
So I think that’s part two of what we want to say is, we want everyone, human beings have obstacles in life. And if those obstacles are too wide and vast, they cannot seek the growth and thrive the way we want them to, the way they want to in their lives. And I see that as the overall goal of RDI is to provide that for individuals.
Dr. Rachelle Sheely: One thing I would say is that, well, I think that sometimes the diagnosis in the CPT code and the DSM-5 information can be helpful. One thing I don’t think is helpful, and one thing I don’t use, and I never talk about, is high functioning, low functioning. Because it almost sets a tone to feel like the future can be predicted, and it can’t.
And in fact, we don’t really know what’s going on with someone when we get to know them. We don’t know how they’re thinking sometimes, because sometimes they can’t tell us, sometimes they can. We also don’t know what the future is.
But I think the more we use the diagnosis, the autism diagnosis, high functioning, low functioning Asperger’s, it takes away the individuality and the uniqueness of the individual. And we put them, we stereotypically put them and pigeonhole them in a way that is not helpful at all. I think the diagnosis, just to kind of reframe it, I think a diagnosis sometimes is necessary and it’s helpful.
But I think we also need to be careful about how we use it and what we use it for.
Kat Lee: And thanks for joining us for Autism, A New Perspective, the podcast show where we help you understand what is going on in the mind of your child. And we encourage you that growth for your child is possible. I’m Kat Lee.
See you next time.
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