🎧 Want to listen? This post is based off of Episode 40 of the Neurodiverging Podcast! Listen on Apple Podcasts | Google Podcasts | Spotify | Youtube
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- Want to learn more about the issues with current autism diagnostic evaluations? Check out my interview with autistic therapist Kate McNulty: https://neurodiverging.com/kate-mcnulty-love-and-aspergers-relationships-on-the-spectrum/
- Another very good resource on this topic is Autastic's "Is an Autism Diagnosis Right for You?" https://www.autastic.com/is-an-autism-diagnosis-right-for-you/
- Crane, L., Batty, R., Adeyinka, H. et al. Autism Diagnosis in the United Kingdom: Perspectives of Autistic Adults, Parents and Professionals. J Autism Dev Disord 48, 3761–3772 (2018). https://doi.org/10.1007/s10803-018-3639-1. https://rdcu.be/cGHSW.
- Fenikilé, T., Ellerbeck, K., Filippi, M., & Daley, C. (2015). Barriers to autism screening in family medicine practice: A qualitative study. Primary Health Care Research & Development, 16(4), 356-366. doi:10.1017/S1463423614000449. https://www.cambridge.org/core/journals/primary-health-care-research-and-development/article/barriers-to-autism-screening-in-family-medicine-practice-a-qualitative-study/42C4232E455C959E706F06E8DF71963B
- Leedham, A., Thompson, A. R., Smith, R., & Freeth, M. (2020). ‘I was exhausted trying to figure it out’: The experiences of females receiving an autism diagnosis in middle to late adulthood. Autism, 24(1), 135–146. https://doi.org/10.1177/1362361319853442. https://journals.sagepub.com/doi/full/10.1177/1362361319853442.
- Legg, H., Tickle, A., Gillott, A. et al. Exploring the Experiences of Parents Whose Child has Received a Diagnosis of Autistic Spectrum Disorder in Adulthood. J Autism Dev Disord (2022). https://doi.org/10.1007/s10803-021-05296-y. https://link.springer.com/article/10.1007/s10803-021-05296-y.
- Lockwood Estrin, G., Milner, V., Spain, D. et al. Barriers to Autism Spectrum Disorder Diagnosis for Young Women and Girls: a Systematic Review. Rev J Autism Dev Disord 8, 454–470 (2021). https://doi.org/10.1007/s40489-020-00225-8. https://link.springer.com/article/10.1007/s40489-020-00225-8
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Transcript of Ep. 40: Asked & Answered: All About Adult Autism Diagnosis
Hello everyone, and welcome back to the Neurodiverging podcast. I'm Danielle Sullivan, and I'm your host, a certified life coach and an autistic parent.
I am so happy to be back from break! It was a pretty good one. I hope you all enjoyed your winter so far.
Today we are back with another Asked & Answered, which is my kind of ongoing series of podcasts sourced from questions that I get in my inbox. And this one is a big one. This one is the Asked & Answered all about autism diagnosis.
For the past year and a half, I have been collecting questions all about autism diagnosis for adults, how you do it, how you get diagnosed, what the process is like, what happens after. So we're going to be hitting as much of that today as we possibly can, and I hope it will give you some much-needed information in one place, so that you can move into your identification process as an autistic with as much information and support as you possibly can.
Before I get started, I'd just like to thank all of my patrons for supporting this episode of Neurodiverging. Patrons offer a monthly pledge to support my ability to do this podcast, and I could not do it without them. If you want to be one of these amazing folks and support the Neurodiverging podcast, please check us out on Patreon at patreon.com/neurodiverging. You can donate $1, $5, $10 a month, and all that money goes to support the podcast, keep it running, get transcriptions going… And funding also goes to help me provide coaching resources for low-income or nonworking autistic individuals, so it's very, very, very appreciated.
Does A Self-Identified Autistic Adult Need a Formal Diagnosis?
So the first question I'd like to answer is one that I have gotten so many times over the last couple of years, and it is, basically: If I believe that I am autistic, and I am self-identified, and I am an adult, do I need to go get formal diagnosis?
Ok. This is a really common question because a lot of us, including myself, have come to our understandings of our neurodivergences as adults. And we've made it through a lot of our lives without having an official autism diagnosis, and many of us are doing quite well, actually, and don't particularly need the supports that we traditionally associate with autism diagnosis. And so what are some reasons that you would want to pursue formal diagnosis as an adult?
There are a couple, so here's my answer to that question.
First of all, there are a lot of other neurodivergences that look like autism. Autism is comprised of a wide variety of different traits, and those traits present differently in different individual people. What that means is that an autistic like me doesn't look like an autistic over here, or an autistic over here, and that autistics all have different, unique traits about them. What that also means is that some of what we think of as autistic traits are also common in other neurodivergences. Autism and ADHD, for example, have many, many traits in common. Autism and borderline personality disorder have many, many traits in common.
If you're confident that you're autistic, and that label is helping you live a good life, and you are not having consistent problems, then maybe you don't need to go get a formal diagnosis. But if you have any question in your mind as to whether you're autistic or whether you might be some other form of neurodivergent, then I do recommend going and getting a formal diagnosis from a neuropsychologist, because they are trained to be able to tell the difference between different types of neurotype. And you may need or want access to different kinds of interventions, medical treatment, or therapy based on your specific neurotype.
Why should I seek a formal diagnosis if I am confident in my self-assessment?
So one of my general answers to "Why should I seek a formal diagnosis if I am confident in my self assessment?" is "You are one individual, and unless you are a medical doctor or a trained psychiatrist, you may not actually be aware of all of the different neurotypes out there, because there are a lot. And I just want to make sure that everyone is getting the support that they, specifically, need." So that is one good reason to go seek a formal diagnosis.
Some other good reasons to seek formal diagnoses are:
If you need support or accommodations at work or at school, you do not need a formal diagnosis. At least, if you are in the United States, you do not need a formal diagnosis, and you do not need to share that with your school or with your employer. However, if you know exactly what your neurotype is, you will be better able to source accommodations, to figure out which accommodations are going to support you best, and then to communicate those to your workplace or your place of education. And so, again, a formal diagnosis can be helpful. Is it necessary? No. But is it helpful? Yes, probably.
Additionally, you do need a formal diagnosis from a medical professional in order to be able to access many government-funded programs. So if you are planning to go on disability, to go on Medicaid, to seek any kind of government grants or support, you will probably need a formal diagnosis.
Additionally, there are lots of non-government supports available with a formal diagnosis. For example, you can get a United States National Parks pass with a formal diagnosis of ADHD, autism, or any other disability, and that's pretty cool. Access to lots of museums and other local institutions, places of education, are often free or discounted with a statement of disability.
Also, lots of places like amusement parks are discounted if you have a disability—and sometimes, the application process will require some kind of formal identification from a doctor or from a psychiatrist. And so that can be helpful to you too.
How does autism diagnosis affect insurance coverage?
Another reason to get formally identified? Insurance. If you want therapy to be covered under insurance, you will probably need a diagnosis code that is linked to those therapies.
Insurance is super duper complicated, and it is not the same for everybody, and you should definitely talk to your human resources department or whoever you have who organizes your insurance for you. But for example: We had my son diagnosed as autistic, not because we specifically needed, for ourselves, a formal diagnosis of autism, but rather because in order to get speech therapy covered under our insurance plan, he needed an autism diagnosis. Speech therapy would not have been covered without the diagnosis, even though he clearly needed speech therapy regardless of whether he was autistic or not.
So unfortunately, insurance often requires a formal evaluation and formal diagnosis in order to offer services like occupational therapy, [or] speech therapy, to be covered under insurance plans. And so that is a good reason to get a formal diagnosis.
This also is true for adults, that many adults only have access to occupational therapy (OT)—which is one of my all-time favorite kinds of therapy to recommend to people, because it can be so helpful to so many folks—but OT is often not covered under insurance without some kind of diagnosis like autism. And so it is worth checking with your insurance plan if you are feeling like you need supports, you need talk therapy, you want talk therapy, you want speech therapy, you want any of that kind of support. You may need a formal diagnosis to get it covered by insurance.
Why Shouldn't I Get A Formal Autism Diagnosis?
Let's talk about some reasons not to pursue a formal diagnosis, especially as an adult.
What If I Out-Mask the Evaluator?
First of all—and this is a common issue, and a common question I get—if I go get diagnosed, are the doctors even going to believe me? Especially if you are assigned female at birth (AFAB), especially if you are presenting as a woman, especially if you are older and not a young child: It can often be difficult to unmask enough to get a doctor to take you seriously.
Now, what I usually say to this is that—
Yes, if you are approaching a doctor who is not familiar with autism in various populations, who is not familiar with what autism looks like in people of different races, of different ethnicities, of different sexes, of different genders, then yes, you might out-mask your doctor. Right? They might not believe you.
However, if you are able to get evaluated by somebody who's a neuropsychologist, somebody who has experience with autistic people of all different kinds, it is going to be really hard for you to out-mask them. And that is because these folks are trained and have seen hundreds of people in their careers. And I can say, as someone who works with autistic people, that even though we are all different, and we all have different traits that we express in different ways, there are some huge similarities among autistic people once you get to know a wide variety of us. And it is my belief that a good clinician, who is properly trained and who is keeping up on autism research will be able to tell that someone is autistic even if they are masking so, so, so hard.
So although there is the possibility of out-masking your clinician, and this can be a barrier to diagnosis, and you do have to push a little harder, I wouldn't necessarily say that it is a reason to not pursue diagnosis.
But it is a challenge that you have to surmount, and sometimes, that challenge is not worth the effort to you. And that is a fine decision, and something that you can certainly decide for yourself and your family.
Racism and Cultural Differences in Autism Evaluation
But one barrier to diagnosis, then, is that clinicians are not trained currently to assess autism well in adult populations, and are certainly not trained to assess autism well in populations that are not white men from America. So if you are non-American, if you are non-white, if you are not a man, you have a disadvantage in many clinical settings for your autism to be seen—so it is more important that you carefully choose the clinician or the team that is evaluating you.
Similarly, we have a parallel problem with autism diagnosis, which is that if you are not an English speaker, or if you are not a white person, you may have trouble finding a clinician—a psychiatrist, a doctor, a therapist—who is of your race, your culture, your ethnicity, and who speaks your language. We have a huge problem in America with having a lot of Spanish-speaking autistic people and not enough clinicians who are Spanish-speaking. And that means that there is a huge group of folks who is not getting access to medical care and information that they need and deserve, just because of this language barrier.
And this is also true with people of color. That we know that most classroom teachers, most medical doctors, most neuropsychologists are white people. And so we are not going to have the cultural knowledge to properly assess people of color.
That is a white folk problem, right, that is not a people of color problem. We definitely want to encourage people of color to have access to these professions, to become medical doctors, neuropsychologists, social workers, therapists, right? But also, it is a problem that white people don't have the education, or are not seeking the education themselves, so that they can serve these groups adequately. Ok?
And so that is definitely an issue that people of color have to contend with that is an issue of racism in the larger structure of society, and that is a barrier to diagnosis. And that is maybe a reason why you would choose not to pursue diagnosis, even if you are very assured of your self-identification.
Ok. So there's your starter for pros and cons to getting a formal diagnosis.
How Do I Get Assessed for Autism as an Adult?
Now, let's talk about the next-most common question I get, which is: As an adult, how do I get assessed for autism, anyway?
If you were missed as a child, it's likely that you are good at masking; your autistic traits are able to fit into the norm, quote unquote, of society. So maybe the way you stim isn't as obvious as the way another person would choose to stim in a neurotypical kind of space. So you have probably already gone through so many medical appointments in your life and not been caught. And then you hit 30, or 40, or 50, and somebody says, "Hey, do you think you might be autistic?" and you're like, "Oh."
What Kind of Professional Should Assess My Autism?
So at that point, say you want to go and get properly assessed: What do you do? What does that look like?
Well, there are a couple of different ways to get assessed for autism as an adult. In my opinion (this is opinion only; please do not take any of this as medical advice, because I am not a medical professional)—in my opinion, from going through my own processes, and my kid's processes, and my friends' processes, the best thing to do if you can afford it, if it is accessible to you: Find a neuropsychologist who specializes in autistic adults and go see them.
They are going to be the person who is the best trained and the best able to help you and to identify you appropriately, and to point you to resources and supports in your community that are going to be the most helpful for you. So the neuropsychiatrist is my sort of number 1 pick for how to get assessed for autism.
You do have a couple of other options, though. You can be assessed by just a medical doctor. You can also be diagnosed autistic by a therapist or a licensed clinical social worker.
Now, in my opinion, there are many, many autistic therapists, autistic licensed clinical social workers in the United States, and honestly, anyone who goes into those jobs is working their butt off and deserves to be applauded for their efforts, because they are not easy jobs. I will say, though, that it is not necessary to have education about what autism looks like in adults in order to become a therapist, or a licensed clinical social worker.
Are these folks likely to have engaged with autistic people before in their lives? Yes! Are they going to be educated about autism, and autistic issues, and neurodiversity? “Maybe” is the answer.
And so, although it is fine to be diagnosed by a clinical social worker or a therapist, it is more likely, in my opinion, that those folks are going to misdiagnose or just miss you completely than a neuropsychologist would.
The other thing is that this goes back to the issue of [how] many autistic traits are similar to many other neurodivergent traits. And so again, a licensed clinical social worker or a therapist are going to use all of their knowledge and all of their professional capacity and capability to help you, and to support you. Are they going to always be able to tell whether you're autistic, or ADHD, or both, or neither, or if there's something else going on? ...It really depends on the individual. On their specific training, on how long they've been in their career, what extracurricular classes they have taken—all that kind of stuff. What their own specific interests and family life is like. Whether they are going to be able to correctly diagnose you is my concern.
Whereas a neuropsychologist, again, is kind of your top tier in folks who are trained to differentiate between different neurodivergences. And that is my specific concern, is that as a life coach, I see a lot of folks come to me and say, "I think I'm autistic, but I could also be ADHD, or what if I'm this other thing, or this other thing?" And, you know, it doesn't mean we can't do anything for you. It doesn't mean we can't try some interventions and see what is the most supportive for you. But in many cases, it's a lot faster, and a lot less stress for everyone, if we know you are ADHD and that's it, right? Then we're going to know which interventions have the most success rate in terms of evidence and scientific research for ADHD folks. Whereas if you're autistic, or if you've got Tourette's, or if you are Borderline Personality, or if you are bipolar, right, we’re going to want to use different interventions for you. And having that specific name, and being confident in the diagnosis, can really help other professionals like me, or your therapist, or your doctor, or anybody know the best course of treatment or support for you.
I'm not trying to say you should not get diagnosed by a therapist or a social worker, but if you have any questions about those diagnoses that you've received, if they don't feel correct to you or if they do feel correct but you think there's something else that that diagnosis doesn't explain? Then I really recommend going and, again, seeing a neuropsych or somebody with that kind of expertise, so that you can just kind of double-check that.
Your therapist is still the best person to talk to about your mental health issues. Your neuropsych is not going to be able to help you as much with your mental health support. So I'm not trying to make a differentiation between, kind of, their medical ability—but rather that they have different specialties, right? And it makes sense to honor those specialties and go to the person who is in the best place to help you, personally.
What Does An Adult Autism Evaluation Entail?
Ok, so say you're going to go to your neuropsych, and you want to know: What is this evaluation going to look like?
Well, I am here to tell you that: We don't know!
Why don't we know? Because there is no universally acknowledged diagnosis process for autistic adults as of right now, 2022. (Laughs) Isn't that frustrating? Basically, different professionals, different neuropsychologists, will offer different sets of tests or diagnosis protocols that they think have the best chance, in their experience, of catching an autistic adult.
So since there's no standard evaluation for autism as an adult, it's really going to vary widely, I'm sorry to say. And so it is a really good idea, can I just say, before you schedule with a neuropsych and before you potentially spend thousands of dollars out of your own diagnosis: Ask them what their evaluation process looks like.
And ask them, "When you diagnose me, and you give me my report at the end, what's going to be in that report?" Is it just a page of, 'hey, you have autism?' Or is it going to include potentially useful therapies, community resources and other value in that? So you really want to know ahead of time what you're going to get out of the neuropsych you choose. And this is why, again, it's really great to know other autistic people in your community, to know where your support groups are, and to get that information one-to-one from other neurodivergent folks when you can.
Now, since there's no standard evaluation, here are some common tools that professionals will use to evaluate autism in adults:
First, they will ask you a lot of questions about your lived experience. Especially if you're coming in as a self-identified autistic: Why do you think you're autistic? You'll probably want to tell them about your sensory experiences, any kind of social concerns you have, any kind of places that you don't fit in. Anything that's hard for you, if you have trouble staying on routines, tell them that. If you have trouble changing your routine, tell them that. If you have trouble remembering tasks in a row, tell them that. So they'll be asking you questions that look for, basically, traits of autism that would display in an adult.
They may also give you some checklists or some evaluation questionnaires. Sometimes, these are the same ones that they could give a child, because those are the tools that we currently have that have been studied for scientific rigor that we know catch some autistic traits, right? Do they apply perfectly, do they map perfectly onto the adult autistic? No. (Laughs) No they don't. But the evaluator knows that, and they are going to be offering questionnaires that they feel, from their wide experience, still give them information about your neurotype.
Some of the evaluation tools that they are going to offer you may be the same screening tools that you took online when you were first trying to understand your neurotype and what was going on with you. So they may be familiar to you, but it's still helpful to fill them out [and] talk to your doctor about them, because they give the doctor really good information about how you behave, how you think, and whether those traits correlate with autism or with another kind of neurodivergence.
Will I have to stim during the assessment?
I had one question which I thought was really interesting, which was: Does the evaluation for autism include any physical motion or behaviors? Is the doctor looking at your gait, your speech pattern, or -
And the answer is basically no. That most doctors don't have any official tests that you're going to take to look at how you walk, or how you talk, or how you speak.
This is different for some children. If you go to a child's autism evaluation, often there will be a whole team there, and there will be a psychiatrist, an occupation therapist, a speech therapist, a physical therapist, all on the team. The physical therapist and/or the occupational therapist may ask your child to do certain tasks to assess where they are, kind of, on the growth scale. Are they picking up fine motor skills at roughly the age they're supposed to? Are they picking up gross motor skills, like walking and crawling, at roughly the age they're supposed to? They may look for retained infant reflexes; especially physical therapists will often do that.
There may be some evaluators who do this with adults as well, but I have never heard of that and I suspect you would know ahead of time that there was going to be six other people in the room instead of just you and your neuropsych; I suspect they would warn you about that.
If anyone listening to this has had an experience as an adult of a team of evaluators including a physical component to your autism screening, I would really love to hear about it, so please leave a comment somewhere or me at email@example.com, because that would be so cool to hear about.
Two final questions for this podcast.
If I'm a woman or AFAB, will that affect my autism assessment?
First: Are we aware of any efforts to develop screeners or assessment tools specifically for women autistics, especially late-identified women autistics? Because we know there is a whole generation of folks between, I don't know, 5 years younger than me and 20 years older than me who were missed in terms of being identified as children, and who have lived lots of our adult lives without the identifier "autistic."
And the answer is yes. There are so many people, it's so exciting, working on screeners and evaluation tools for autistic... autistic people in general who are not young white boys.
We talked about this a little bit in the podcast with Kate McNulty who wrote Love and Asperger’s (I will link in that description to the podcast episode). Kate is a licensed therapist, a sex educator, and she's also a late-identified female autistic. And Kate and I talked together about why assigned female at birth (AFAB) autistics are often missed in the child screenings that pediatricians provide to many families—why we're missed, why we're not caught until later, and what efforts are being made to better assess women and girls especially.
So if you're interested in that, I highly recommend going and checking out that episode; I'll put a link below. But the short answer is yes, a lot of folks are working to make autism screeners work better for more populations. The ones we have now were designed for young, white, American boys. So if you are not young, white, and American, or a boy, then they are more likely to miss you than not—which is, everyone agrees, really unfortunate and very tragic, and leaving so many people out of the support structures that they need.
And so many, many, many people are working to improve these evaluations. But it also does take time to create questions, to test them, and to make sure that they actually work. So I'll leave some links below to other research that you can read if you're interested in this question, or you can always email me and I'm happy to talk about it more.
But the answer is yes, we are working on it. We are not there yet! And that's why it's important to do your own research to advocate for yourself, and your children, and your family members, and maybe for your friends as well, as best you can. Because, like I said, some specialists will not know what autism looks like outside of young, white, American boys. And that is unfortunate for everybody.
How do I know if I'm working with the right evaluator?
Last question for today: How do I evaluate my evaluator? How do I know, when I am going to spend this maybe thousands of dollars out of pocket to get this diagnosis, how do I know that I am choosing the right person or the right team to help me?
My answer to this is: Always ask a million questions, and do not be ashamed of it! Ask them:
- How are they going to evaluate you?
- Which tests are they going to perform?
- What will they need to know so that you can be prepared?
Some evaluators ask for information from your parents, for example, about how you were when you were a child, right, maybe before you started masking. This can be a huge surprise to some folks, because some of us don't get on with our parents, and maybe don't want to have to bring them into an assessment, or maybe don't want to have to contact them at all to ask for their remembrances.
So it is totally reasonable and acceptable to ask your psychologist, your medical doctor, whoever is evaluating you, lots of questions. Make sure that you have a rapport with them. Make sure you feel comfortable and confident with them. Make sure you understand what is happening and why. Make sure they take you seriously. Again, if you are going to spend thousands of dollars on this, right, for their expertise, you want to make sure that you have a confidence established together. That you can trust that when they see what you are, they will evaluate you appropriately and take your concerns seriously.
It is always ok to ask questions.
Why did this professional refer me to someone else?
Now I do know that I have had a couple of questions about "Oh, I asked my evaluator this, and they basically didn't answer me and referred me somewhere else." Sometimes that happens. If you get referred elsewhere by an evaluator, just remember, you never know why other people decide to do the things they do, right?
So try not to take things like that personally. It may be that whatever question you asked just made the evaluator realize that they're not a good fit for you, or that the rapport is not there. And again, that is not a judgment against you as a person. That is them saying, "I don't think that I am qualified, or that I have the expertise as an evaluator, to help this person. And ethically, it is in my obligation to help them find someone who can actually help them."
So, often, if you ask an evaluator or a potential evaluator a question that seems to put them off, or has them refer you— I know it can be really disappointing. And I know it can be not encouraging when you've been working at this for such a long time. But I would really encourage you to not take that personally, and to take it instead as an indication that your evaluator has seen something in the relationship that makes them think that you all are not a good fit. And that doesn't have anything to do with you as a person, right? And that does not mean that you asked them something inappropriate, or you asked them something unfair, or that they're judging you, it means none of that.
All it means is that something happened—maybe totally unrelated to you—that made them think, "Huh, I don't think I can support this particular person for whatever reason, I'm not the person to do this, I'm going to see if I can get them help elsewhere."
And sometimes it's even, like, "Oh, I have too many clients right now, I guess I can't take this client." Which is like— you know, really frustrating, when you're struggling to be taken seriously.
But I just want to say that, not that it happens a lot, but that I have seen it happen, and to try not to take that kind of thing personally. Because it very, very, very likely is not personal at all. It just a flukey thing that happens sometimes. And sometimes it's because, ethically, that evaluator thinks that they are not the person who can help you best. And it is our responsibility as professionals, whether we're a coaching professional or a medical professional, to always think of the client first. To always think of the patient first and make sure what we're doing is appropriate for that patient.
And so if an evaluator decides that they are not the appropriate person for you, they are trying to do something in your best interest, even if it's frustrating for you, which I do understand very much.
I want to thank you so much for being here with me today. If you have enjoyed this episode and you think it has been helpful, please go leave us a rating and a review on Apple Podcasts or Podchaser, any other streaming service with ratings; it really helps other folks find this podcast. And then I really appreciate it! I would love to hear from you. If you have questions, or comments, or things you would like to hear me address in the next podcast, please email me at firstname.lastname@example.org, I would love to hear from you.
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Thank you so much for being here with me today, and please remember: We are all in this together.
[Bloopers] That would display in a dolt. That would display in an adult.
Try saying "in an adult," like, three times fast.
They are looking for traits of autism, as they would be— ...Is there another way to say this? I'm just gonna, I'm just gonna make it work with that, we're just gonna cut it.