Frequently Asked Questions

answered by

Erika Sanborne

For anyone, but especially for parents of autistic children, I highly recommend following Jess Wilson, who writes at Diary of a Mom. Highly recommended. I also very highly recommend following Em Mainey, who puts out a ton of free resources via her NeuroWild channels. You can also license some of their brilliant graphics via their TPT page. Go through TPT if you are a therapist, teacher, social worker, SLP, or other professional with walls in an office in need of neurodivergent-affirming artwork that illustrates tricky concepts clearly and simply.

A few other facebook pages that are good to follow include:

Websites (with social media links therein)

For ADHD specifically, I recommend following a young man named Connor DeWolfe, whose short form (i.e. 30 second long) videos are brilliant, and he’s on all platforms. He makes them funny, but his content is also well-informed and correct, on point.

If you are wondering whether you or someone you love might have ADHD? Watch Connor’s videos. If they are relatable? You’re probably ADHD. You might want to seek a diagnosis so that you can get some support and/or medication as advised. I have literally never met someone who’s ADHD and doesn’t feel these ways about life. If they’re not relatable, you might have something else going on.


For disability justice, I recommend following Sins Invalid. From their organizational bio, “Sins Invalid is a disability justice based performance project led by disabled BIPOC that incubates and celebrates artists with disabilities, centralizing artists of color and LGBTQ / gender-variant artists as communities who have been historically marginalized.”


For autistic adults who are speaking-privileged and who benefit from using scripts, I highly recommend someone that does not actually intend to produce content for autistics. His name is Jefferson Fisher.He’s a trial attorney and he makes short form videos to help people learn how to argue and communicate.

And I’m telling you? These are potentially a gold mine of scripts for speaking autistics who benefit from scripting. Seriously. Go take a whole day (I’m looking at you, ADHDers, and watch all of his videos.

answered by

Erika Sanborne

I realize Morgan the Dog responded to this question also, but I have a human response. I trust that you realize Morgan’s posts are meant to add levity but also a sort of relatability, because my very human response is actually the same as Morgan’s.

One change in my routine is coming up next week, when my wife is going away by herself, for a solo writing retreat. That makes for a lot of changes in my routine, as Rachael will not be with me.

I rely on her presence to ground me, and to sort of verify that my responses to things that occur in my days make sense. When she’s not around, I miss her because I love her, and I also miss her supportive role.

And so, like Morgan, I cope with change in my routine by identifying what I will be missing and planning ahead to sort of cover those basic needs. It’s the planning ahead that’s key for me, so that I don’t leave myself in a situation unprepared, and without my regular resources.

In the absence of my regular support person, I cope by strategically turning to my remaining resources. Next week that means some scheduled times with friends, way more than I would normally do.

The act of scheduling all of these additional activities is difficult for me, and Rachael can help me with the scheduling somewhat. If I do not plan ahead, the week won’t go well because I won’t have anyone to turn to with my day to day “little questions” (which is what I call them) that I need support with answering.

For example, last time Rachael was away, a friend of ours made a social media post in crisis. This person is self-destructive and tends to not accept help that they need, but is also sometimes not safe. You with me?

I responded to them, like I normally would. But I’d also normally circle back with Rachael, to make sure I responded right. The little question would be, “I offered the right thing here, right? Am I missing anything?” And this is a question because this person would likely not accept what I offered, and would continue to self destruct.

Basically, I wanted to be sure there was nothing further I could do to help our friend in crisis, since the friend doesn’t make good choices, and won’t be able to say what they need, or accept anything anyway. But I still want to try, in case this time may be different for them.

So, someone else, whom I’d pre-arranged to be in touch with while Rachael was away, was able to take my text about this and weigh in. “Yeah – looks like you made a reasonable offer. I don’t see anything else you could do here.”

That’s the help that I needed from a friend while Rachael was out of town.

Make sense?

Now that’s just me, and an example of the kind of thing that I need when Rachael is out of town, which is a change in my routine that I need to deal with sometimes. You’d need to figure this out for yourself, but I hope this example is helpful to you.

 

 

answered by

Morgan the Dog

The main change that I find upsetting is when my Mommy goes somewhere without me. I used to only stare in the direction of her departure and cry until she came back. Now, I try to cope with this change by using my remaining resources. For example, I turn to Erika more. Erika is my backup person when my Mommy goes somewhere without me.

Usually I shadow my Mommy everywhere. But when she goes away? I shadow Erika. She is my backup. She is okay…

Erika also answered this question for herself as an autistic person, but I kinda understand, as a dog. I do.

Change is hard. And we both miss the same person sometimes. Her name is Rachael, my Mommy. I have the best Mommy and I miss her when she leaves me…

answered by

Erika Sanborne

I think Applied Behavioral Analysis (ABA) as it is used today to inform the clinical response to autistic children for being autistic, and to reward autistic children when they act like they are not autistic, is cruel.

I have experienced the wrath of the ABA lobby first-hand, late Summer 2023 in response to my public call to psychologists in advance of the APA Annual Meeting, and I’m not impressed with the individual providers’ lack of integrity, given how some of them even took to emailing the university where I have taught for twenty years in the psychology department.

New ABA tho?

I also don’t think “the new ABA” is better than the more overtly harmful ABA applications of yester-year, just because they stopped hitting the kids. By the way, they didn’t universally stop hitting the kids. Look up what’s going on right now at the Judge Rothenburg Center (JRC) in Massachusetts. The folks who run that place speak, as “ABA experts” at most ABA Psychology Conventions. This type of harm is sanctioned by the discipline, so don’t tell me about “the new ABA” being better until you can tell me why the JRC is literally still shocking Black teenagers like caged animals.

And it’s disturbing to me as a person with empathy how many parents rejoice when their autistic child finally breaks, because for a while the kid is able to act and to perform as if they are not-autistic, in order for either the punishments to stop or for the denied human interactions to resume.

Money Talks

I am aware that at present, ABA is the only thing US health insurance will pay for if your child is autistic and they need support. The scarcity of options creates a fallacy in that people are left assuming that ABA must be good, because it stands alone.

There are so many people working on that. Please also read my Summer 2023 ABA and AMA article, if you have not previously read it. I want you to realize that the motion within the AMA (which at least got ABA removed from being explicitly named) was brought forth by the medical students section.

I’m not surprised that it’s the medical students section of the American Medical Association that would be on the cutting edge of how to better support autistic patients, and knowing that it would be to not pathologize their nature. They would also be unpersuaded, at present, by other factors.

Because please also think about what you know, at least in the US, about how things get funded and which things end up being funded. Think of other industries you are perhaps more familiar with. When there is only one option available to everyone, despite so much pushback and evidence of its harm, what do you know about that one option?

At minimum, “there’s more to this story” right?

Of course there is. And ABA centers pop up in some places like those Little Caesar’s franchises do. I was starting to wonder if they were going to do a thing, like dunkin Donuts and the ice-cream place did? It’s all about the market and what will sell where.

But if you honestly believe that The Best Things are what prevail and endure, when there is only one thing that US health insurance will pay for? I’m sure that you should go ahead and read some other website because we cannot have a serious conversation.

ABA is still the only thing US health insurance will pay for if the child’s diagnosis is autism and it’s treatment that is sought. That is correct. That does not make it a good thing in most cases.

TL;Dr

If I were related to an autistic child for whom I had input toward what would be done to them?

I would make ABA our last choice rather than our first choice. It’s probably not needed and probably going to do a lot of harm. If you haven’t weighed that harm out yet? You don’t yet have enough information to be making this decision.

Autistic Researchers

A recent article was written about the future of autism research by a whole tribe of autistic researchers who research autism (Pukki et al. 2022). As a researcher myself, and as a disabled academic, I have come to hold a higher bar for representation. When these folks say “Nothing about us without us,” they are autistic researchers who research autism, and they are talking about that part.

So, what did the autistic resarchers say about ABA? What I will do for the reading-averse is to share the excerpts that I appreciated. This is a reading through my lens. For your own, please consider it for yourself.

Excerpts (Pukki et al. 2022)

“Regarding the neurodiversity paradigm, we wish to point out that considering something as natural variation does not equal claiming that it ‘does not need intervention.’ It means preferring interventions that target systems and environments, supporting individuals to thrive as they are, instead of trying to bring them closer to the ‘perceived norm.’” (p.94-95)

“Most autistic people’s primary wishes for the next 5 years would not concern clinical interventions but matters of law, ethics, policy, and how these translate into support practices and realization ofhuman rights.” (p.94)

“Diagnostic services must be seen as a basic right for all autistic people, not something that clinicians grant at their discretion or only when the diagnosis can lead to the provision of interventions. Diagnosis helps both children and adults to develop identity, self-knowledge, and personal strategies, and to start engaging in peer support, self-advocacy, and collective advocacy. These can be crucial to well-being, quality of life, and realization of basic rights, especially when very little else is available.” (p.96)

“Historically, autistic children and dependent adults who are unable to give informed consent have been enrolled in experiments that may not have been allowed on non-autistic people, based on weak, far-fetched hypotheses. This has fed the creation of new pseudo-treatments. Research that focuses on pseudo-cures decenters the voices of autistic people regarding our actual needs and priorities.” (p.96)

“Autistic people’s organizations have attempted to draw attention to the fact that defining the behavioral characteristics listed in diagnostic criteria as ‘‘core,’’ and trying to develop biological treatments with behavior as the primary target and means of measuring success, is both unwanted by many autistic people andlikelydestinedtofail; similarbehaviordoesnot equal similar biology.” (p.96)

“We urge researchers to focus the development ofmedications on cooccurring health problems that autistic people identify as distressing, and to target clearly identifiable biological factors instead of behaviors, with the aim of improving autistic people’s quality of life and appreciating neurodiversity in this context as well as others. We predict that for many of us, better health would automatically lead to some positive changes in cognition and behavior as well as quality of life and well-being.” (p.96)

“Changing behavior, as such, should not be the main goal of clinical research or treatment for autistic people of any age. Appearing autistic or acting in typically autistic ways should not be considered an illness. Clinicians need to be aware of the potential mental health risks of ‘‘camouflaging’’ and avoid encouraging or manipulating autistic people to engage in it, even through naturalistic or play-based methods.” (p.97)

“Seventy percent of ABA research has been reported to involve conflicts of interest, with less than 6% of the researchers declaring the conflicts. A recent US Department of Defence report on their Autism Care Demonstration program, which involves 47,000 certified ABA professionals and provides services to nearly 16,000 autistic people, mostly children and adolescents, expressed serious concerns about the lack of results from their ABA provision.” (p.97)

“We invite researchers and clinicians to join the critical conversation about ethics in autism research and services, and to actively include the voices of diverse autistic individuals and communities in their work. We wish to draw attention to power imbalances and lack of accessibility in such discourse.” (p.97)

“Current common practice that exacerbates the power imbalance is inviting individual autistic people to take participatory roles in research projects, representing their own ‘‘lived experience’’ only; in these roles, they are isolated, engaging with powerful organizations as individuals, often with very limited personal resources.” (p.97)

“To break existing imbalances, it is also imperative to differentiate key stakeholders. In the case of autism research, stakeholders such as parents, caregivers, and clinicians are driving the research agenda. For decades, researchers have suggested therapies or interventions, often dismissing the views of those who have received them. Acknowledging autistic people as the key stakeholders is an essential and fundamental step forward.” (p.98)

“Autistic people must be involved in setting the research agenda and have decision-making power in autism research, and not be merely tokenized.” (p.98)

Reference

Pukki, Heta, Jorn Bettin, Avery Grey Outlaw, Joshua Hennessy, Kabie Brook, Martijn Dekker, Mary Doherty, Sebastian CK Shaw, Jo Bervoets and Silke Rudolph. 2022. “Autistic Perspectives on the Future of Clinical Autism Research.” 4(2):93-101. doi: https://doi.org/10.1089/aut.2022.0017.

 

answered by

Erika Sanborne

No. There are legal documents linked on the bottom of every page on this website which say more, but briefly: All of the views and statements expressed on this website are solely those of the respective authors who wrote them, and do not necessarily reflect the views of any past or present organizations, partners, or employers with which the author ir or has been affiliated.

This website is owned by Erika Sanborne Media LLC, and is not affiliated with any other organization or entity.

answered by

Erika Sanborne

Of course not. And unlike a certain appropriative non-profit organization that shall not be named, we don’t purport to do so. Further unlike that non-profit, Autistic PhD is principally run by an autistic person, and centers autistic people and their varied experiences in anything we share.

For example, while we are creating some content intended for parents of autistic children, the focus is on the well-being of autistic children, not on making allistic parents feel better.

Each article on the Autistic PhD website is the individual work and opinion of the noted author, with citations as appropriate. An author may often describe their experience in autistic spaces and communities, which is generalized but their positionality is transparent and we believe it’s important to note this and to leave space for the full variation of human difference.

Here at Autistic PhD we believe in the power of the narrative of lived experience as a key source of knowledge. As such, we prioritize the writing and opinions of autistic scholars and professionals who draw upon their own lived experiences coupled with their expertise as gained through the credentialing institutions of academic, gatekeeping as they may be.

Graduate degrees give credibility in some contexts, and potentially some skills that can be useful to helping us to sort the knowledge gained from life in helpful ways that lead to more skillful application of knowledge and service delivery that we offer in our professional lives.

But we do not lose the narrative, which is why stories are central to the articles you read here. Some may be grounded in scientific literature as appropriate, because we are in dialogue with the extant scholarly literature related to what we do.

Other articles here need not include a reference list, because knowledge comes from many places. Together we seek to build that body of references, adding what we know and how we do what we do for the readers’ consideration.

answered by

Erika Sanborne

So many people ask me questions about autism that I wanted an efficient way to provide helpful responses. I also wanted to grow something cohesive that combines my experiences with the expertise of some trusted others who want to contribute to “the good stuff” out there for autistic people and those who want to get to know them.

Part of it is solidarity with other autistic folks, sharing our stories, and another part is reaching back in love to the children whose parents are making big decisions today that will affect their little ones’ wellbeing. Some of those parents were asking for my thoughts on things, and so I formalized it and this site was born.

I want to respect their trust with good quality info, while also ensuring that they have enough information to resist the tides that pull parents into harmful, oppressive, and sometimes abusive so-called treatments that hurt children in order to make them appear more normal and thus make parents feel better.

So, for all of these reasons and more, I wanted to share what I’ve got with whomever wants to look to me for my thoughts. And I’m including more voices than my own, with varied expertise (coming onboard very soon).

We have about a million blog post topics on the drawing board, so please do sign up for our email newsletter so that you will know when new topics come out. The newsletter comes out approximately four times a year.

For anyone reading this who does not know me (Erika), while this project is still new, having soft launched only in May 2023, I don’t begin things that I cannot confidently do very well. This is gonna be a good project, and I’m so glad you all are here for it.

Please do share your thoughts and responses on our social media channels and let us know who you are. Although we’re on Threads, Instagram, YouTube, and facebook, it’s the facebook page that is where people seem to be gathering and forming community.

answered by

Rachael Keefe

Yes, happily so since 2010.