It is Autism Acceptance Week! Today, I will share my experience with support structures suitable for an autistic adult, to outline their impact and availability.
(Yesterday: autism as a disability of trust.)
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When I walked into the emergency unit in 2014, in need of help for acute psychological distress, I did not know that I needed help. I merely felt “uncomfortable” and none of the self-help techniques I knew had worked throughout the two years prior, and I figured someone at the hospital might get creative.
Such is the way the autistic mind works: when the body (or even mind) experiences dysfunction, or dysregulation, the lack of interoception frequently caused by autism prevents the mind from even realizing something is amiss, much less why. What saved me in 2014 was not the fear that often accompanies people at risk of self-harm—I was not afraid, for I did not perceive I was at risk—no, what saved me was a purely rational, almost scientific thought: something was obviously wrong with me, and I did not know what, and the best place to find an expert that would be able to help at six o’clock in the morning, on a Sunday, was probably the hospital. And it was next door to where I lived, so I could just walk there.
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In hindsight, there is almost something comical about suggesting that someone who starts realizing they suffer from severe depression should check themselves into the hospital.
It is a tragedy really: a family doctor can only recommend (and refer someone to) psychological care if the patient expresses psychological distress. For this to happen, the patient must first become aware that psychological distress exists, or display symptoms that the doctor is trained to recognize. If the patient does not express psychological distress, if the practitioner is not trained to recognize the symptoms of distress which are different for autistic individuals, or if the patient does not even take initiative to meet the general practitioner in the first place there is not much the practitioner can do!
I had had issues with mental health for many years then but did not understand what they were. I lacked the introspection ability, both in terms of interoception and theory of mind, to detect the mental health issues what I needed help with. I did not experience clear-cut physiological troubles, and so never thought to see a doctor. And so my troubles increased unchecked, slowly but surely over time.
What went wrong? Which support structures were missing?
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As my therapist explained to me, later, an emergency distress call to psychological care is still, today, a common way for adults without awareness of their position on the autism spectrum to enter the process of self-discovery and eventually access to adequate support structures for their needs. It is common because, unfortunately, it is nearly the only way.
In my opinion, this is terribly inefficient. And also most unfortunate.
It is unfortunate because this means many adults probably make-do with struggle and possibly distress for a large portion of their life, mistakenly thinking they just have to “suck it up” and “be strong” and whatnot. As long as they do not encounter life events that are so stressful that they do require emergency support, they may miss out on adequate support entirely.
It is also inefficient for two reasons.
For one, it is much more expensive for society to pay for the high-intensity care needed to help someone in distress, than paying for routine maintainance care on a continuous basis. This is the same math as yearly dentist check-ups vs. major restorative works after a critical dental failure.
Second, someone who fares through life with continuous anxiety and dysregulation, without the adequate care for their autistic needs, is someone who is less productive at work, less supportive for their family, less good a friend, less caring for the needs of others. Conversely, an autistic person who seems to “perform” at life at an ok-ish level might be, in fact, someone who could achieve great things when supported adequately.
So, what should we do about this?
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Before we can delve into strategic musings, it may be helpful to enumerate some support structures that work.
I mentioned psychotherapy already above. Beyond the obvious utility in case of acute need, I would say a periodic visit to a psychologist, on a similar schedule as a dentist—that is, at least about yearly—is generally useful. The expert can perform a mental health check-up and detect cognitive patterns or stress situations that could cause systemic long-lasting dysregulation, before it actually happens.
As far as structures go, psychoterapy is an “advanced” one: to be effective, the individual needs to learn how to talk to a mental health expert effectively. This requires both a willingness to open up about these topics, and a vocabulary to describe various afflictions. Allistic adults typically know how to do this already, but autistic adults without visibility onto their position on autism spectrum may need a transition system before they can fully utilize a mental health expert.
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Adjacent to psychoterapy, I found value in a one-off phase of psycho-education (wikipedia link). This is an approach originally developed for victims of serious mental illness, but which was also found to offer benefits to adults who encounter crisis situations related to their autism. The core of psycho-education is to teach (or re-teach) emotional and social skills to participants, and to engage, educate and support their loved ones. Psycho-education can be offered by (or requested from) individual therapists, however it can also be obtained from health educators, social workers and certain adult care centers. The service is also usually covered by health insurance. Regional autism support organizations usually maintain a directory or network of providers of psycho-education.
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A well-understood and essential support structure is formed by a mutual support group of peers who have shared similar experiences and/or are willing to share their current experiences with each other on a regular basis.
A mutual support group is not exactly like a friend group (although its members can be friends too), in that the primary support of the group is to talk through problems and not just have fun together.
Finding or creating a mutual support group from scratch is, unfortunately, very hard work for an autistic person. I was lucky to meet like-minded folk during my psycho-education sessions and we successfully started our own support group. Much later, I came across this article by David McIver on how to create a mutual support group from scratch and I now recommend these steps to folk around me.
On the topic of support groups, I am aware that men in particular have a harder time seeking and forming support groups, because of certain social norms and expectations (some of them nowadays referred to as “toxic masculinity”). This is covered in this excellent article in The New York Times. Although the idea of a support group may feel incongruous and anxiety-inducing for some men, the truth is that support groups work and enable a healthier, more fulfilling emotional life.
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A perhaps more controversial support structure is home assistance.
The non-controversial bit concerns certain autistic adults who simply lack sufficient executive function to live both independently and healthily. In these cases, home assistance is a fact of life, a structure that starts from childhood and is preserved during the transition into adulthood. (Note/reminder: a high need for home assistance does not necessarily denote intellectual or emotional incapacity: these adults may be very well able to maintain a social circle, an occupation, perhaps even an ongoing trade of labor for money at a high skill level.)
The perhaps controversial bit—or, let’s say, somewhat taboo—concerns adults, like me, who are very well able to run a household independently (I even take pride in keeping all aspects of my living space pristine, well organized and with an administration fully in order), but for whom doing so remains extremely taxing.
The attentional control, planning and stimulus control I must exert on myself to run a full round of cleaning duties on my house is physically and emotionally exhausting. After such a round, typically on a Saturday, I find myself unable to perform socially or participate in other activities in any way until late the next day, typically on Sunday. This recovery period, in turn, prevents me from fully utilizing this time to relax emotionally and recuperate from my other (typically work-related) activities.
Where an allistic person can tidy up their living space within two hours and then transition into one or two days of fun and relaxation, the same amount of work can become a two-day, exhausting project for an autistic person. Where an allistic person can plan and execute a home repair within a day and even derive fun and enjoyment for it, the same amount of work can become a one-month, anxiety-inducing project for an autistic person.
While it is possible for them to do these things, it is unfair to expect the autistic person to do all of it themselves. I want to enjoy my week-ends too!
And this is why I recommend home assistance even for folk who do not have high support needs, as a way to reclaim free time and opportunities for enjoyment.
For example, I use a subscription to a home cleaning service. I use a combined washer and dryer to avoid moving the clothes from one device to another. I hire construction workers for home repairs and maintenance. If I was wealthy enough, I would hire staff to take care of groceries and cooking as well.
All this costs money, of course. It is even expensive! Unfortunately, only high-need adults typically benefit from government assistance. But this is the price of my freedom and my mental health, and I thus never hesitate about these costs.
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A related, under-valued and yet extremely effective support structure is organizational assistance.
This is not often recognized by health care professionals, and yet in my book are absolutely essential to turn frequently overwhelmed autistic adults into well-balanced members of society.
Organizational assistance exists in many forms.
In my case, I have hired two experts. One is an accountant. My accountant helps me yearly with taxes, and supports me by methodically reminding me which documents I need to collect for all the deductions. My accountant can also review contracts or other legal documents throughout the year to confirm my understanding. As a company owner, I also pay my accountant to teach me how to keep my administration in order and audit it afterwards. All these tasks would be major sources of anxiety without an accountant to support me.
An accountant may not be necessary for a young person with a simple administrative or financial profile, but I would say every autistic adult beyond 30-35 years old should seriously consider this service.
Beyond this, I also hired a personal assistant on a hourly basis. I delegate tasks to this person and things “magically” get done for me. Example such tasks include: researching and booking travel and accommodation for work and vacation trips; researching, interviewing and booking home repair and maintenance services; planning and taking appointments with government instances; fixing problems with those instances as they arise (e.g. negotiating refunds and vouchers when travel gets cancelled due to a worldwide pandemic).
I am perfectly able to do this work myself; however, like for house cleaning above, I now recognize it to be mentally exhausting. Every time I can delegate a task, the delegation pays for itself by releasing excess free time and generally lowering my anxiety.
After sharing the above wisdom with a coworker, I was informed that some folk, like them, are lucky to be able to lean on a “life partner” or spouse for all these tasks. This surprised me.
My first reaction to this is that it only works if the life partner actively enjoys doing this work as a hobby; otherwise, it’s just unpaid labor, which is unfair to the partner.
My second reaction is that this only works if there is a life partner to start with. Autistic adults have trouble forming and retaining relationships, so I’d say the presence of a life partner for organizational assistance is likely more an exception than the norm.
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A much less controversial, but no less valuable support structure is coaching.
Coaching is similar to therapy in that it helps the individual work through their challenges, asking the right hard questions, and serve as a sounding board for reflection and introspection. It is different from therapy however in that the coach is an active participant and contributes their personality, experience and own views to the interaction, whereas a therapist’s role is to maximally subtract themselves from the relationship with the patient.
Coaching exists in many forms, and alas there is a recent fad of coaching services merely able to provide simple well-being techniques, which makes it extremely difficult to find and choose the right type of coaching. Even moreso for an autistic individual for whom the process of researching and auditioning candidate coaches may be overwhelming.
In my experience, the best quality coaching and also the simplest to choose from is obtained via referrals.
Autistic adults have an advantage here: mental care workers usually maintain a directory of life coaching services or professionals with specific expertise in working with autistic customers. All one has to do is to ask for a referral. It is also common in a mutual support group (see above) that one member already successfully utilizes (or utilized) life coaching, and can refer other members.
This is incidentally how I was referred to my current life coach. Depending on the locale, life coaching might even be a government-subsidized service—for example, it is subsidized in the Netherlands.
Additionally, autistic adults who are able to hold a job may be able to benefit from training programs offered by their employer. Certain organizations even offer both professional training and career coaching to employees. These are tremendously valuable services for an autistic person: it can provide additional clarity and method to advance one’s career and delineate one’s role, which in turn can lower anxiety and provide more confidence during daily tasks.
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The last and not least support structure that I want to share here is well-trained, well-functioning support on the workplace.
For folk without paid employment, a well-defined set of routines, optionally accompanied by a well-maintained agenda, may be all the support needed.
For folk trading their labor for money, especially when they don’t have full control over their work agenda (i.e. in the case of salaried or semi-salaried employment, as opposed to true freelancing), the employee agrees to relinquish part of their agency in exchange for a degree of protection by the employer. This protection includes continuity of employment and income, but not only. The employer is also responsible for providing a safe environment that protects the health (and, ultimately, the productivity) of the employee.
For autistic employees, occupational safety includes reasonable accommodations and the application of certain management techniques. It is the responsibility of the employer to provide these accommodations, however they cannot start doing so unless requested. It is thus the responsibility of employees to express their needs and request the appropriate accommodations.
Workplace accommodations include, but are not limited to:
- best practices and strategies to build trust, as described in yesterday’s post.
- this includes in particular more attention for emotional regulation by managers, in excess of what is typically required for allistic reports.
- work planning ahead of time, to establish visibility and predictability over multi-week, preferably multi-months periods, to reduce anxiety-inducing uncertainty.
- mediation around conflict resolution, since autistic employees often are unable to understand the subtext of a situation and may unwittingly cause trouble around them.
- regular, mindful and detailed feedback on employee performance, to establish expectations, acknowledge progress and also reduce anxiety-inducing uncertainty.
- opportunities for personal development (I think about it as “continuous career coaching”), since the autistic individual may not be able to perceive their own strengths and weaknesses and may thus find themselves unable to plan the right strategic steps to advance their career.
Unfortunately, even though these accommodations are reasonable and very much needed for autistic employees, many organizations are inexperienced in providing them. They may never have heard about these acommodations, or perhaps managers or HR departments do not know or believe that these accommodations actually help. Or they may be uncomfortable about trying something new. Or they may pretend that they are too costly and mistakenly dismiss how this cost would be offset by the resulting productivity improvements.
Every time an organization is unwilling or unable to provide this support, it causes autistic employees to become disadvantaged (and, sometimes, actively discriminated against) compared to their allistic peers.
For better and for worse, autism is currently classified as a medical condition by the psychiatric community. There are problems about this classification, however it provides an opportunity: in most locales, employers may not discriminate against an employee due to medical conditions, and are mandated by law to invest into reasonable accommodations! Therefore, a polite but firm conversation with managers and HR departments to remind them about this legal protection may be all what is needed to coerce an inexperienced (or unwilling) organization to start developing the structure needed by autistic employees.
Personally, I prefer to take another perspective: accommodations needed by autistic employees are beneficial to everyone. An organization able to support all employees in a way that is adequate for autistic needs will gain a better reputation as a good place to work. It would confer it a competitive edge on the hiring market. This is an argument that the autistic community needs to strengthn further, to leave the viewpoint “autism is a medical condition and needs accommodation by law”, a viewpoint which I think is not sustainable long-term.
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Of course, many autistic adults also consider their family as a support structure. I do not have direct experience with this unfortunately.
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To wrap up today’s post, I would like to share a few thoughts about strategy as well. How does one even “start” these various support structures?
Here we must be careful to understand the fundamental difference between two populations: autistic adults with awareness of their position on the spectrum, and autistic adults without.
An autistic adult with awareness will have been trained from earlier on to seek support. They already know they need support and are usually only unsure about which form of support is suitable, or how to obtain it. For these individuals, it is useful to provide information about the structures available together with practical, detailed steps on how to obtain them.
In contrast, an autistic adult without awareness does not understand autism and likely does not perceive they would benefit from support structures. They may even be suspicious about the idea. They may even be afraid of stigma around autism, and this fear would prevent them from taking initiative and seeking support. They might even be in a persistent, continuous state of anxiety and emotional exhaustion due to masking and dysregulation, without time and energy to reflect on their support needs. For these individuals, we have a collective responsibility to find ways to give them access to the resources they need, before their needs escalate into psychological distress. But we also cannot infringe on their privacy by suggesting or coercing them to seek a psychological evaluation or autism diagnosis. What then?
In my view, this is a problem that we (collectively, as a society) are still figuring out.
One thing that I predict will work is advocacy. As more prominent folk “come out” and talk about their experience of autism and the support structures they use, these ideas will enter public discourse and may reach those adults still unaware of their needs.
Another thing which I very much wish to happen is normalization of the support structures to all groups in society, even including allistic individuals. As I wrote before, everyone would benefit from being treated in the way an autistic person needs to be treated. Things like psychotherapy, psycho-education, mutual support groups, home and organizational assistance, accommodations on the workplace, etc. are beneficial to everyone. If we apply these structures more generally, and folk talk openly about how they benefit, the chance increases that more autistic adults will get the support they need even without seeking it. Also if we increase their applicability, they may even become cheaper.
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Here is a summary chart of the support structures mentioned above.
| Support structure | Impact | Availability to folk who are yet unaware of their position on the spectrum | Monetary cost |
|---|---|---|---|
| Mutual support groups | ★★★ | Generally available, as long as folk have access to a safe space to open up about their feelings. | ★ (no costs) |
| Life coaching | ★★★ | Generally available. | ★ (when government-subsidized) ★★ (when paid for individually) |
| Workplace accommodations | ★★★ | Poorly available currently (unfortunately). | ★ |
| Family | ? (probably ★★★) | Available if family present, empathetic and in good standing. | ★ |
| Home assistance | ★★ | Generally available. | ★★ |
| Organizational assistance | ★★ | Generally available. | ★★ (when deductible as business expense) ★★★ (when paid for individually) |
| Career coaching | ★★ | Generally available. | ★ (usually employer-sponsored) |
| Psychotherapy | ★ (for routine check-ups) ★★★ (for crisis situations) |
Only if motivated by periodic check-ups or a crisis situation. | ★ (usually covered by health insurance) |
| Psycho-education | ★★★ (first time) ★ (follow-ups) |
Not usually available. | ★ (usually covered by health insurance) |
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Feel free to reach out to me to share which support structures have helped you in the past, or what you think would be good ways to make them available to co-workers or friends who are not aware of their position on the autism spectrum.
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References:
- Wikipedia, Interoception.
- Pia Bradshaw et al., ‘Autistic’ or ‘with autism’? Why the way general practitioners view and talk about autism matters, Australian Journal of General Practice, doi. 10.31128/AJGP-11-20-5721, 2021.
- Wikipedia, Theory of mind.
- Vanessa Blanchard, 10 Autistic Phrases Explained: The Meaning of Words Like Allistic and Neurdivergent, 2020.
- Wikipedia, Psychoeducation.
- Wikipedia, Executive functions.
- David McIver, Notes on Running a Mutual Support Group, 2020.
- Andrew Reiner, Building Emotional Safety Nets for Men, The New York Times, 2020.
- Wikipedia, Masking.