Thank you! Research Findings on Adults with ASD

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lforanlewis
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18 May 2017, 9:38 am

Hello all,

My name is Laura Lewis and I am a nurse researcher at the University of Vermont. Over the last two years, I posted a couple of notices in this group looking for participants for research studies on adults with Autism Spectrum Disorder and their partners. One of my research studies has just been published online and I wanted to share these articles with you here.

This is a study on the challenges of obtaining a formal diagnosis of ASD in adulthood from the perspectives of individuals who were both self-diagnosed and formally diagnosed with ASD in adulthood.

Most of all, I want to say THANK YOU for making this study possible through your participation and feedback for those of you who opted to participate and/or to share your perspective with me (including critiques or explanations of why you opted not to participate)! Unfortunately I am not able to attach a PDF directly here, but I have made the article available via PDF on my research website, which can be accessed here if you are interested in reading: https://autismspectrumresearch.com/published-research/. I hope more will follow over the next few months and I will check back in as soon as I have any updates.

Sincere thanks,
Laura Lewis, RN, PhD
Autismspectrumresearch.com



kicker
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18 May 2017, 11:13 am

That was an interesting read. What follow up do you have planned for it? I ask due to the questions that I had while reading it that went unanswered.

For Example:

How does these results relate or don't to the general populous with mental health problems, what are the differences?

Where there more instances in resource poor regions as opposed to resource rich regions?

You mentioned that many participants had trouble finishing school or going on to higher education. How does the results compare to comparative controls in the general populous? (Do the reasons for avoiding mental health professionals in people suspected as having ASD =/= a control group without ASD suspected with the same education and social-economic experience.)

Just a few of the questions that popped into my head as I read it. Please don't mistake it as I am being critical. Just critically thinking.



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18 May 2017, 6:22 pm

Congratulations on the publication.


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18 May 2017, 6:44 pm

Thank you very much Laura. You have produced a particularly useful and thorough study. I almost cried when I read the reported percentages in the table of experienced difficulties, with despair rather than surprise. Here we are in the 21st century, there is mass media knowledge about the barriers, problems and issues, so it is not that the information is not out there; it is that professionals are either not listening, not interested, or perhaps see no personal benefit in amending their practice and the heuristics they use (which work for neurotypical clients) to be more inclusive to the needs of AS people.

We have the information, and your study has added to it, coherently and comprehensively. Now how do we get that past the barriers of resistance in the medical profession in order to create momentum for real change? Sadly, I think that professional population may read your study, then turn the page, and conduct practice as usual. To me, (if my perception is correct), this indicates a fundamental lack of respect for the AS population as a whole. That disrespect may not be a conscious process, but an insidious bias at a deeper level towards the needs and worth of the neurodiverse.

Many of our Wrong Planet members have posted over the years of their experience of being trivialised, discounted, and isolated within the context of medical encounters before and after diagnosis. Those who have posted recently report the same issues of many before. Nothing is changing. So how is change to be initiated?

Knowledge, as the old saying goes, is power. And AS people are empowered by studies like yours; they are validated and affirmed in their diagnostic experience (rare enough to be valuable in any context) but it is not translating into better outcomes. How do we move to that most important step forward?



burnt_orange
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18 May 2017, 9:37 pm

Thank you for this. I feel like I've been given a voice.



Anon_92
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18 May 2017, 10:16 pm

I read your "research" (although I do compliment you for having no worms on your site) and you really went out of your way to say basically "How do you know someone is an Aspie? When you ask them."

Is there anything I left off?

You might have stopped and asked an Aspie who PMmed you offering to answer WHY it is what it is but have a nice day. Back to the three thousand of us in near-total silence like an army of ants who, each at their moment, steps in to signal the herd...



B19
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18 May 2017, 10:24 pm

Please understand that it is entirely up to each member of Wrong Planet to choose whether or not to respond to unsolicited private messages. Not everyone likes receiving PMs, especially from members they have no history of positively interacting with on the forums. Please don't feel entitled to a reply to every PM you send to a stranger here, it doesn't work like that. They will respond if they want to, that's their choice to make.



B19
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18 May 2017, 10:34 pm

Anon_92 wrote:
I read your "research" (although I do compliment you for having no worms on your site) and you really went out of your way to say basically "How do you know someone is an Aspie? When you ask them."

Is there anything I left off?


The study addresses barriers to diagnosis as experienced by the AS population in multiple countries, with a good percentage of responses from women as well as men. Not much work of this kind has been done, so it is a valuable and thorough addition which adds to current knowledge about this topic.



Anon_92
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18 May 2017, 11:00 pm

If you read the article about a dozen times, you'll realize all this article says is "I semi-medically but thoroughly researched that Aspies are weird and should be left alone... let's hope a doctor can now start giving Aspies more pills and more free money..."

I am an Aspie Savant in the sense that I generally have remembered everything I ever did/saw/etc... since I was four when, one night, I realized I was self-aware and have near perfect recall from that day to today and all I want to do now is sit back and reflect on all I already know etc... with my already overloaded mind but for me, the only answer there really truly is after 43 years of non-stop thinking is "43" and no one asks me why...

But I'm also HERE to discreetly provide real answers to the things in the general forum that appear to be asking for answers, not but ut-oh... here come the mods and here come the "people ignore PMs..." and back I go into a silent corner.

I speak in word salad to all my NT friends and they all tag along because they all know with everything I say, there is also a clue in it.

I'll be over in Word Salad...



B19
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18 May 2017, 11:15 pm

If that's your mission, then kindly continue posting on your existing thread here viewtopic.php?f=3&t=340611&p=7530937#p7530937 instead of hijacking this thread from the OP to focus on yourself.



lforanlewis
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19 May 2017, 11:06 am

Thank you all for your feedback - both positive and negative. I am always open for respectful discussion!

Kicker, you raise a lot of interesting questions, and I love your critical thinking. I will have to take some time to think these over. My immediate next steps in research have gone in a different direction than the questions you raised. I am now planning a study to look qualitatively at the experiences of individuals who identify as sexual minorities who have ASD, since I was unaware of the high percentage of the ASD population who may be additionally marginalized (beyond ASD) for identifying as a sexual or gender minority.

I would also love to look at differences in presentations among men, women, and non-binary gendered individuals with ASD, but this presents some philosophical challenges for me. The basic question I wonder here is: If someone presents without the symptoms that we have defined to be ASD (which I believe may be skewed to a "classic" male child picture), can we still call it ASD (e.g. in adults, females, non-binary genders)? I have started to think about our picture of ASD like our old picture of heart-attacks. We would describe "classic" symptoms as those that most often occurred in males, so we often missed all warning signs of heart attacks in females since they presented differently. I think we might be doing the same with ASD. Here's the difference, though: when thinking about heart attacks, we can objectively say whether or not someone "had" or "didn't have" one. Unfortunately with ASD, if we are defining it a certain way (based on typical male child presentation) and then someone doesn't present those symptoms, using the DSM-5 criteria we would have to "objectively" say that person did not have ASD (even though I would argue that they still might have ASD). ...Does that make sense? That may have rambled out of control, but I hope you might be able to see what I am thinking.

B19, thank you very much for your support. You raise another important issue: Now what? I fear that you may be right with many professionals, and my hope is that even just a few might stop and think about the findings and how they relate to their practice. My big picture goal (down the road when I can build the proper network and funding) would be to try working with a group of professionals to pilot some online therapies. I hypothesize that we might be able to establish some trust between patient and provider online in place of or before working together in person. I think this might open up access to individuals who are too distant from providers or can't find adult specialists, reduce social anxiety surrounding appointments, and begin to build some trust in a less threatening environment. We'll see. It certainly wouldn't solve all the problems identified in my recent work, but I am hopeful that it might lessen a few of them.

Burnt-orange, you have given me the greatest compliment you could give me!

Anon_92, I am not sure if I am misinterpreting your initial message, but I typically respond to all PMs... If I have missed one of your messages in the past or offended you in some way, I apologize. I certainly do not believe that "Aspies are weird and should be left alone," and I have never advocated for "more pills" or "more free money" in my research. I am sorry that this is the message you received from my work, as it is not the message I intend to spread.

Again, thank you all for your feedback!!



AspieUtah
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19 May 2017, 11:26 am

Great research. Thank you! :D


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kicker
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19 May 2017, 12:39 pm

lforanlewis wrote:
Thank you all for your feedback - both positive and negative. I am always open for respectful discussion!

Kicker, you raise a lot of interesting questions, and I love your critical thinking. I will have to take some time to think these over. My immediate next steps in research have gone in a different direction than the questions you raised. I am now planning a study to look qualitatively at the experiences of individuals who identify as sexual minorities who have ASD, since I was unaware of the high percentage of the ASD population who may be additionally marginalized (beyond ASD) for identifying as a sexual or gender minority.

I would also love to look at differences in presentations among men, women, and non-binary gendered individuals with ASD, but this presents some philosophical challenges for me. The basic question I wonder here is: If someone presents without the symptoms that we have defined to be ASD (which I believe may be skewed to a "classic" male child picture), can we still call it ASD (e.g. in adults, females, non-binary genders)? I have started to think about our picture of ASD like our old picture of heart-attacks. We would describe "classic" symptoms as those that most often occurred in males, so we often missed all warning signs of heart attacks in females since they presented differently. I think we might be doing the same with ASD. Here's the difference, though: when thinking about heart attacks, we can objectively say whether or not someone "had" or "didn't have" one. Unfortunately with ASD, if we are defining it a certain way (based on typical male child presentation) and then someone doesn't present those symptoms, using the DSM-5 criteria we would have to "objectively" say that person did not have ASD (even though I would argue that they still might have ASD). ...Does that make sense? That may have rambled out of control, but I hope you might be able to see what I am thinking.



I am sorry to hear you won't be continuing with that particular subject of research. I would love to know how it compares to other research I have read dealing with barriers to care and if in fact there is a higher instance of people with ASD who have more complicated barriers than say someone with Clinical Depression. How those barriers differ and what roles certain conditions such as social-economic or co-morbidities play into it.

As it reads now you have identified the same barriers someone with PTSD, heart disease, HIV, etc. , someone who is Latino, Black, LGBTQ, Women, etc. have to accessing care. Which is a known problem that people have difficulty accessing care based on stigma by self or otherwise, resources or perceived lack thereof, bad experiences whether experienced or relayed and under education.

Again interesting read, really disappointed you have no plans on continuing it.



lforanlewis
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19 May 2017, 1:28 pm

Hi Kicker,
I do see this as the "same direction" for my research, but a different direction than the one you identified. My next steps have been identified based on the outcomes of the study I shared. I am hoping to look at the unique problems of sexual minority/gender minority identities and to look at how different genders present with ASD since non-male gendered individuals showed statistically and clinically significant barriers greater than males in the current study. I also hope in the future to look at using the Internet as a means to overcome some of the barriers identified in the current study. I view these as direct extensions of the current study. You pointed out several other interesting/exciting directions, and I am intrigued and you are getting me thinking!! That said, the research process moves slowly and I am trying to stay focused to tackle one research question at a time! I hope this makes sense!
Thanks again for your feedback and ideas!
Best,
Laura



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19 May 2017, 11:12 pm

The fear of not being believed especially as everything tends to be attributed to the psychiatric diagnosis is particularly strong with me. Then if I'm not believed I'm stuck with things and no hope of needed support.


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B19
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19 May 2017, 11:21 pm

I think that fear is widespread in our community, and for very valid reasons.

There are still many doctors who think that AS is a psychological disorder rather than a neurological condition; and the lived experience of AS is very different from the tick-the-box approach that seems to dominate the minds of most clinicians. Evaluation needs to be far more comprehensive than a box ticking exercise solely based on criteria that have dubious content validity.