The number one question I receive from listeners is some version of, "I was just diagnosed as autistic. Now what?" What are some common experiences that people have after autism diagnosis in adulthood? Late autism diagnosis is often defined as diagnosis received after one's 18th birthday.
Topics discussed also include:
If you'd like to know more about topics discussed in this episode, check out:
"Autism Diagnosis in the United Kingdom: Perspectives of Autistic Adults, Parents and Professionals" by Laura Crane et al.
"Exploring the Experience of Seeking an Autism Diagnosis as an Adult" by Matthew de Broize et al.
"'Anything But the Phone!': Communication Mode Preferences in the Autism Community" by Philippa Howard and Felicity Sedgewick
"Autistic women’s experiences of self-compassion after receiving their diagnosis in adulthood" by Rosemarie Wilson et al.
Episode intro and outro music: "Time's Passing" by BLUE STEEL, Cushy, and Damma Beatz
Theme music: "Everything Feels New" by Evgeny Bardyuzha.
All episodes written and produced by Kristen Hovet.
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Today I'm talking about experiences that adults have after being late diagnosed as autistic. I'm defining late diagnosis here as an autism diagnosis received after one's 18th birthday. This episode is partially inspired by listener questions and partially inspired by my interest in research documenting post autism diagnosis experiences in adults. As with many of the episodes on The Other Autism podcast, I'm going to weave together my own personal experiences, anecdotal evidence, and then more objective autism research. It usually ends up looking like a lopsided sweater, but I'm good with it if you are. I'm hoping you're good with it. Anyway, it's always a good time for pretty music.
I receive a lot of emails from newly diagnosed autistic adults. And one of their main concerns involves, okay, so I'm diagnosed now what. They often wonder about other autistic adults' experiences after diagnosis. And they often ask me for any recommendations that I have regarding support groups, therapy, and therapists, and so on. Most feel they're not given enough direction or resources from the psychologists or other healthcare providers who diagnose them. They pretty much feel on their own in coming up with some plan for themselves. And I think it's so different or so shocking because many of us have experience with, you know, the medical system, healthcare system, mental health system. And for the most part, when there's a diagnosis, there's some kind of clear process of how to go forward. And when it comes to autism diagnosis, there's virtually nothing. It's like you have this diagnosis, bye-bye! So I think that's why it's so shocking. And many of us go in with expectations that we're going to feel so much better, we're going to have answers, we're going to have a clearer sort of process in place afterwards. And we're always pretty much shocked when those expectations are not met. And I'm here to tell you to maybe readjust your expectations, at least for the time being, until these processes and systems change and improve.
I recall, when I was diagnosed, the paperwork I received from my psychologist included some reading suggestions, a list of some private Facebook groups to follow, and a general recommendation to think about pursuing therapy to address difficulties arising from being autistic. So I did most of those suggestions. I did a lot of reading, I looked for therapists who focus on autistic adults, who at the time were almost impossible to find. And the one I ended up finding was not actually autistic themselves, that I know of anyway, but they promoted themselves as neurodiversity affirming. And I did look up the adult autism Facebook groups listed in my paperwork. I should say, too, that, I know I got more information than a lot of other people I've spoken with received after their diagnosis. So I kind of felt lucky in that way. One or two of the Facebook groups had been removed or deleted. But I did manage to join one of the other groups on the list, only to become exhausted from the arguments that were taking place there at the time. I'm not sure if that's changed, but at the time it was just too much, too soon. It was just a lot of noise that I couldn't deal with very well. While I did make a couple online friends through that group, I made the decision to leave and eventually formed my own private Facebook group, which was really the start of my involvement in self advocacy, and actually eventually led to this podcast. After several months of leading and moderating this Facebook group, however, I decided to make the difficult decision to hand it over to an autistic academic, as I found that, as the main moderator of the group, I was spending way too much time moderating posts and comments and trying to intervene between folks when arguments or conflicts arose, which was actually very often. It was so not good for my mental health, which had already taken a huge hit from medical related post traumatic stress. If I tried to take a break from the group, I'd be bombarded with impatient and or angry messages, that I needed to respond to something or get to something faster. This was really the last thing I wanted or needed, especially as I was trying to slow my life down, make sense of my life post diagnosis and as a recent cancer survivor, still going to regular checkups at BC Cancer. It was all super exhausting, super triggering, and honestly not where I wanted to focus my time or attention. It was a lesson, though, in realizing just how intense the autism community can be as we grapple with issues, cope with individual and shared trauma, and deal with external threats and misunderstandings. I honestly think this is such a common experience in any group that's been repeatedly pathologized, ostracized, and experienced several types of prejudice. So I don't fault the autism community for that experience. But I will say that, if you get into the social media spaces, it can be very, very difficult and very, very exhausting. So just be careful. And just keep that in mind. And make sure that you have resources in place, should those kind of experiences happen.
Anyway, what I really wanted to focus on was content creation. And that just wasn't happening with the Facebook group I created. So while Facebook groups can potentially be helpful and supportive, I don't recommend starting one, or moderating one, or maybe even joining one right after diagnosis, unless you find one that is really tightly moderated, has lots of moderators to spread the work around, and has very strict rules about conflict. And I also recommend treading with great caution when getting involved in social media groups, private or public, related to autism in general, as I've mentioned. From what others have told me about their experiences, which many of them match my own, I think the better bet would be looking for online or in person support groups, where there's a careful intake process and the groups themselves are managed by a skilled facilitator. Some of these groups charge a fee, some of them on a sliding scale based on your own income, and how much you can afford. Others are free and just run by the community itself. So it's really going to range and it will take some, you know, digging around to find these resources.
The other thing it's really important to point out, I think, is that everyone has very different experiences and feelings after diagnosis. There's some overlap and similarities, but everyone's going to be different, and the timeline of what they experience and when is going to be different. Usually, there's some combination of very positive and very negative thoughts and feelings after diagnosis. I personally was initially over the moon happy knowing that I had a reason and a name for what made me feel so different all through life, and why I had more difficulties compared to most of those around me. I felt a real sense of belonging, knowing that there were countless others with similar experiences. But in the months that followed, I also experienced a lot of sad moments looking back, and knowing how hard some things were, and how much easier it would have been had I known all along about autism. In fact, I recently came across a Reddit comment I'd written shortly after diagnosis. I wrote, quote, I'm finally connecting the dots, and seeing so many past experiences clearly for the first time. But there's also an overwhelming sadness when I think about how much pain could have been avoided if I had known much earlier, end quote. There's definitely a lot of taking stock that happens, going over life experiences and events, and processing everything through this new lens of being finally identified as autistic, as this amazing, wonderful, complex neurotype. And then, at least for me, following a time of deep processing related to my diagnosis, I confronted significant challenges in knowing how and when to disclose my diagnosis to others. In other words, to share my diagnosis. When I did share my diagnosis, I don't think I was ready for the range of responses I received. The disappointing responses were very challenging to cope with. And I learned what it meant to be burdened by having to educate literally every person I spoke with about autism, and the ways it can present, and how I wasn't a so called typically presenting autistic person by traditional diagnostic standards, but that this was changing, and so many adults are being diagnosed, and on and on and on. It was just so much information sharing, so often.
I also found myself having to defend the diagnosis against people who were skeptical about it and freely shared their skepticism with me. And I also found some folks just didn't know what to do with me, and even neurodiversity affirming specialists didn't always actually understand autism, as it turns out. I think some slap on that label of neurodiversity affirming, and I'm not quite sure they understand their own understanding, or lack thereof, unfortunately. All that to say, choose wisely who you share with at this point in time in human history. It's not easy, and most people don't care to do the heavy lifting themselves, in terms of educating themselves and learning where to look for the latest in autism research or clinical findings. And now, four years after my diagnosis, whenever it's at all relevant, I'll usually tell someone new in my life that I'm autistic. But generally, I've given up really caring what they think, or even given up being overly concerned with their responses. I am at a point where I have no ***** left to give. In all seriousness, I have a greater understanding of where the myths and stereotypes come from related to autism. And I understand that it will take a very long time for the majority of humankind to shed these myths and these stereotypes. We've got a long way to go, but we are making progress. I will debate with and educate folks if I have energy to do so, if I have energy to work on clearing up their assumptions or preconceived ideas, but otherwise, I just let them know, Hey, I'm autistic, end scene, and go about my day. I figure that disclosure may not help me on an individual level, especially when I'm in a flippant mood. But if more people start disclosing their diagnosis, it is bound to be a good thing. I think over time, it's bound to lead to greater understanding at the societal level. And maybe folks will start to understand just how many autistic individuals are out there. Maybe they'll begin to realize the rainbowy spectrum in all its wondrous diversity, and not try to match us to their old, stodgy misplaced ideas of what autism is and what it looks like. Hey, I think as late diagnosed folks, we all had those old, stodgy misplaced ideas of autism ourselves, none of us are immune. So we can give others the benefit of the doubt and show some patience. It's so challenging sometimes. I know this so well. But we do owe it to our fellow humans.
All told, when it comes to disclosure, or sharing about your autism diagnosis, know that how comfortable you'll be with doing so depends on so many factors involving where you are in life or even how you're feeling on that given day. I know that my own tolerance for dealing with this has ebbed and flowed quite a bit. And I'm sure it's like this for most others, too. For example, some days it might really hurt me when others start speaking slowly to me because they've learned I'm autistic and they clearly assume that I won't be able to understand, while other days I don't care and may try to make jokes about it or make light of it in some way.
Moving on now to the research that I looked at in preparation for this episode. A British study by Rosemarie Wilson and her team looked at women's experiences after receiving an autism diagnosis in adulthood. They found that diagnosis helped the women better understand themselves, especially when reflecting on past experiences, and ultimately have greater self acceptance and self compassion. The women reported finding new ways to give voice to their needs and engage in self care following their diagnosis. In sum, late autism diagnosis led to new understanding and self acceptance, that, quote, transformed previous negative feelings of failure and self blame and provided a new critical view, end quote. The researchers defined self compassion as having three qualities. Number one, self kindness instead of self judgment. Number two, a sense of common humanity instead of feeling isolated from humanity, and number three, mindfulness instead of over identification with challenges, I guess in this case associated with being autistic. The researchers state that research related to self compassion is on the rise due to self compassion's strong association with psychological and mental well being. It's important to note that these researchers cite previous research indicating that neurotypical or non autistic women have lower levels of self compassion compared to neurotypical men. And then their own findings showed that autistic women, especially before autism diagnosis, have even lower levels of self compassion than their neurotypical female peers. So any amount of increased self compassion is going to be a good thing for sure.
While diagnosis was mostly experienced as positive by the women in this study, the participants also reported a wide range of emotion, ranging from newfound feelings of validation to significant grief. Some participants reported frustration related to having to identify and unlearn coping mechanisms that they'd been enacting for most of their lives. And while most disclosed their diagnosis to close friends and family, they avoided disclosing to employers, colleagues, and others in professional settings. Some of the participants in this study noted that their sense of connection to the autism community didn't actually increase following diagnosis, and that they still felt disconnected and isolated. At the same time, however, most participants reported an increased sense of autonomy and confidence to assert their needs following late autism diagnosis. And in psychology, autonomy is defined as the capacity to make informed, uncoerced decisions. So it's really self governing, self acting, acting on one's own terms. It's a very, very positive thing to have increased autonomy for sure.
An Australian study by Matthew de Broize and his team found that their participants reported completely absent supports following their autism diagnosis. Participants in this study reported wanting and needing support after their diagnosis, but that in most cases, it just was not there. These folks wanted help processing their diagnosis, life skills assistance related to real world situations or problems involving university or work, moving out of the family home, etc, and assistance in how to move forward with the new information they'd received.
A study conducted in the UK by Laura Crane and her team reported similar results that late diagnosed adults feel directionless after their autism diagnosis. The participants in this study noted a lack of advice or guidance, and zero or very few support options. Some stated that support was not offered until a total crisis point was reached. And other times services were available, but were prohibitively expensive and not covered by medical, therefore, they just couldn't access them. Autistic adults without intellectual disabilities in this study reported the most problems or barriers in finding post diagnosis support. Some, including an almost 50 year old newly diagnosed autistic person, reported being thrown into support groups with autistic children as young as four and their parents, or being offered support groups where the range of needs was just too much. One participant stated, quote, the support group was too stressful because it's too much of a wide spectrum of people with autism. There were people with so many different types of needs, problems and different ages. Very stressful. End quote. Most adults in this study also indicated that they most wanted post diagnosis support in the areas of practical advice, and guidance related to accommodations, education, employment, healthcare, and so on. Some reported receiving some practical guidance, but that this guidance was not delivered by their psychologist or assessor or some governmental group, but instead was delivered in fragmented or disorganized ways from nonprofit organizations that were struggling financially themselves.
This study also worked with professionals to gauge their understanding of support limitations in the time following diagnosis, and professionals agreed that there was indeed lack of post diagnosis support. The consensus was that these professionals wanted to offer support, but they were simply unable to due to increasing demands on their time, lack of funding, and their own limited resources. Autistic adult participants in this study brought up one unique challenge in that the diagnosis process itself is very grueling for many and digs up difficult past experiences. But as one participant said, quote, then you're just left to work all that out for yourself, end quote. Diagnosis should include interviews with family members, hopefully with parents or caregivers who knew the individual as a young child. However, this can lead to having to process, with family members, experiences or events that the assessment interviews brought up. And this can lead to significant conflict or tension with family members, especially if the family members do not understand or do not agree with the diagnosis. Most newly diagnosed adults are offered zero support in dealing with this aspect of the diagnosis journey. To summarize, be prepared for very little or no support following your diagnosis. If you have not already experienced this process for yourself, it will most likely be left up to you in terms of next steps.
Here are my suggestions that I've kind of cobbled together for the time following your diagnosis. Number one, take your time and treat yourself with care and patience. Number two, see if the person who diagnosed you also conducts post diagnosis counseling, or can recommend someone who does. This can mean sending a follow up email to the administrative staff where your psychologist or other type of assessor works, including your questions related to post diagnosis, support, and guidance. Heaven forbid they only accept phone calls. They really shouldn't if they know anything about autistics' passionate hatred of phone calls unless, of course, it's with a family member or close friend or beloved. Number three, if you're interested in therapy, look for a therapist or counselor who is also autistic. I'm finding that more and more are themselves diagnosed and will openly state this on their websites. If you can't find an autistic therapist in your area, consider life coaching by an autistic life coach. Number four, look for online or in person support groups that are well facilitated and not too huge. The best support groups, at least for me personally, are literally only a few people max. A lot of people talking is often too much for me and leaves me prone to shutdown, even if the group members are neurodivergent. It's just too much information to process. And my ability to think clearly and even speak just goes out the window. Number five, get involved in a local nonprofit autism organization. Here where I am, I chose to get involved with AutismBC. BC stands for British Columbia, and I'm now on the board of AutismBC as well as being a member. This has made me feel more closely tied to the autism community in my province, has led to new friendships and professional connections, including with fantastic and super supportive neurotypicals, and has led to increased courage in my own self advocacy pursuits. Number six, intimately learn the power of No. Many of us late diagnosed folks are people pleasers and we have spread ourselves too thin for too long, to the detriment of our mental and physical health. Take time to assess what you want and what you don't want in life. And also assess what you've been doing or pursuing because this is what others have wanted for you. Find out who you are and what makes you you and live as closely aligned to this true self as you possibly can. I know this makes it sound easy or simple or like a quick process. But trust me, this takes a long time to achieve any kind of clarity on who this true self even is, and what the true self even wants. To this day, I still find it challenging to work out what I want, versus what others want for me in certain scenarios and how to even like, tell the difference between the two. Some scenarios are harder than others, but I'm getting better at it. And I'm seeing real progress, slowly but surely. I mean, I'm a work in progress. And I'm okay with that. Lastly, number seven, surround yourself with people and content, hopefully like this podcast, that celebrate autism and celebrate you. You've probably had several years under your belt of positively abusing yourself emotionally and mentally, being overly critical and judging yourself harshly. So find ways to let that all go and surround yourself with people and content that supports this new approach to self acceptance and true self compassion.
I'd love to hear your post diagnosis stories. We've heard now from some people with their diagnosis stories. And there are some more lined up for April and May. And so now I'd love to start weaving in some post diagnosis stories. And I'd love to hear you know, stories of both success and challenges. I know that the post diagnosis supports are going to range quite a bit from country to country and even province to province, state to state, even city to city, town to town, you name it, it's going to be quite varied. So I'd love to hear your experiences, you've heard a bit of mine, I'd love to hear yours. And also certain systems or supports that you found or developed on your own or for yourself. For me, it's been reaching out to my friends, the ones who have stuck with me through the years, and really being open and honest with them about my diagnosis, about my challenges related to it. And asking others directly to share their own experiences with me. That learning process is so helpful to feeling like I'm part of a real community that is quite diverse and ranges in beliefs about autism, beliefs about neurodiversity, but that can come together and be unified in at least wanting to increase supports for autistic folks and increase a sense of unity, increase understanding and education about autism and the various ways it can present.
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Until next time, bye.