The Autistic Guide to Settling the Estate of a Loved One When They Die

As many of you know, I lost my dad in April 2023. Losing a loved one is hard under any circumstances, regardless of your neurotype; but I found the process to be particularly challenging as an autistic/ADHD/PDA person because as the sole heir, I had a lot of expectations placed on me by lawyers, Hospice, the funeral director, and even family. Expectations that would probably be challenging for a neurotypical person to navigate while grieving, but were also almost impossible to meet while struggling with reduced executive functioning, situational muteness, shutdowns, and meltdowns. Much of what actually made this whole process so unforgiving was the lack of clear steps or guidance in what I needed to do to settle his estate and execute his will. I, for some silly reason, was under the impression that if I asked the lawyer, or the social worker, or even the funeral director, what I needed to do to start the process, they would know and tell me. After all, did they not work in the business of death and dying? The lawyer especially should know; she drew up his will. But what I actually learned was that no one really knows exactly what you are supposed to do; or if they do know, they don’t feel comfortable talking to you about it, and they pass you along to the next person with a vague assurance that that person will have the answers you seek. Spoiler alert: they will also not have the answers you seek. Or maybe they just could not communicate to me in a concise and clear way, step by step what I needed to do, and in my reduced cognitive functioning state, I really needed someone to step in and show me the baby steps I needed to be taking.

It's also possible that there were books I could have sought out that would have provided guidance, but in the midst of the emotional turmoil and chaos from my dad’s descent into dementia to hospice to death in the space of a month and a half, it never even occurred to me to look for a book. It was very much a stressful, in-the-moment experience where I was high adrenaline and emotions constantly, and critical thinking was at an all time low. Somehow, by walking face first into many obstacles, and by the process of trial and error, I did find out what needed to be done, and how to go about starting the process of closing all my father’s accounts, subscriptions, etc. And it occurred to me that if I felt completely blindsided by the process of settling Dad’s estate before, during, and after his death, then a lot of other people were feeling this way too.

So that’s how this post came into being. It’s not my usual neurodivergent fare, but it is definitely something neurodivergent people could use and benefit from. ********This post does not replace actual legal advice.******* My experiences were my own, and reflect the laws of my state (Arizona), and the attitudes and policies of the companies I encountered. Depending on where you live, things may be vastly different. But the steps I recommend you go through in the process of the decline and death of a loved one do have parts to them that are universal and could be helpful to anyone. I also wish to acknowledge that many of the recommendations and suggestions I make are made from a position of financial privilege. There are unspoken assumptions in my advice that you will be able to easily pay for a will, pre-pay for funeral arrangements, etc. I also make the assumption that your loved ones will be willing to discuss wills, power of attorney, and what to do if the worst case scenario were to happen. I acknowledge that not everyone has the sort of relationship with their individual family members that makes these discussions easy or even possible. Some of you may even have the role of caregiver or executor of estate thrust upon you unwillingly by nature of sharing DNA rather than making the deliberate choice to serve. I also acknowledge that a not insignificant percentage of us struggle with being underemployed and financially strapped rather than flush with cash.

It is not my intention to be an insufferable know it all whose advice only caters to the privileged few. I am writing what I know from my own experience. I hope that if my suggestions are not realistic for your situation, that you feel comfortable dialoguing with me and everyone else in the comments. Maybe with the combined neurodivergent hive mind we can find solutions that are accessible to those who do not have disposable cash readily at hand. Things to do before your loved one becomes gravely ill or dies Accounts and Subscriptions: Never let your loved ones sign up for auto renewal anything without them keeping a detailed and current list of all those renewals, the company, and their customer service number. This is doubly true if your loved one has ADHD. If your loved one shows signs of dementia, consider getting power of attorney and restrict their access to online purchases with an allowance. Having not recognized the signs of advancing dementia in my father, I left him alone to spend his money however he wanted. He was buying $500 worth of Hostess Twinkies and clothing each month on Amazon. I am now sorting out mountains of clothing that he never wore, but were bought in a dopamine seeking fit while he was struggling with dementia. How many plaid, flannel, wooly shirts does one old man in the Arizona desert need? A friend recommended the app Rocket Money to me to help me sort out my father’s unknown subscriptions, but I have not yet checked them out so cannot vouch for their quality. Caveat emptor.

Bank Accounts: o Make sure your loved one has you as the beneficiary on their bank accounts if you depend on them financially, or you will be without funds for the entirety of the probate process which can be four months or longer (depending on your location and the complexity of the estate). Know what the estate laws are in your state/country. In Arizona, if the combined assets of the estate are $75K or greater, it doesn't matter that you are the sole heir and there is a will. It will take a minimum of four months to go uncontested through probate court, and it will cost $5000-$7000 to get this pushed through probate court by your lawyer. During that time frame, you will have no access to those funds. The law does not care if you cannot pay your mortgage, so have this discussion with your loved one about this before it becomes an emergency.

o If your loved one has less than $75K in personal assets, your job is considerably easier. You will file a Small Estate Affidavit with the courts and in 30 days, everything is yours. This is much cheaper, and only costs $1700 to go through court. (Details of this are specific to the state of Arizona and may be different at your location or if property is also involved)

Power of Attorney: Get a medical and a financial power of attorney for your loved one years before you need it, or you will find yourself up the proverbial fecal creek minus a steering implement if your loved one becomes incapacitated mentally or physically. Things like head injuries, strokes, dementia, or metabolic encephalopathy can happen unexpectedly or sneak up on you, and if you do not at the very least have a medical power of attorney (MPOA), you are not able to best advocate for your loved one’s safety and wishes.

MPOA: When my father was admitted to the hospital last February for cellulitis, we did not know he had dementia. We also did not know that his cellulitis was going to turn into a serious blood infection, which in turn triggered metabolic encephalopathy. The encephalopathy caused his mild dementia to rapidly accelerate into moderate dementia with hallucinations, paranoia, and radical personality change. Thankfully when we had his will drawn up many years ago, my father named me his MPOA and his financial power of attorney (POA). I was able to insist to a skeptical nurse that my father’s behavior was completely out of character, and far more serious than the “hospital delirium” they kept trying to blame. MPOA allows you to make medical decisions for them if they are mentally unable to make reasonable and safe decisions for their own care. My insistence that the hospital take my father’s mental state seriously led to him being seen by neuropsychiatric physicians, and more appropriate care was initiated to try to control his hallucinations and delusions. Ultimately I had to use the MPOA to refuse to accept my father being discharged home into my care, because his advanced dementia and physical weakness, as well as my physical inability to lift him, made him a safety risk to himself and me. Without the MPOA, I do not know what options I would have had to get the hospital to take his condition seriously.

POA: The power of attorney allows you to access your loved one’s funds, enter into legal contracts for them, and buy and sell property or items for them. The biggest benefits of the POA are in the case of physical or mental incapacitation, you are able to act as your loved one’s agent.

Using my own situation as an example, I was able to find a long term care facility for my father, sign the contract to set up care for him, and pay the funds for his stay. You always hope that you will not have to use this power, especially if your loved one is confused or doesn’t understand why they can’t come home; but it was extremely helpful in providing safe continuity of care for my father when he needed to leave the hospital, but wasn’t safe to come home. If it had depended on getting his agreement or cooperation, I would not have been able to find him safe care, and I would have been endangering him and myself, as I was no longer able to physically care for him without injuring myself, and he no longer could get to the restroom by himself or walk.

The POA also allowed me to begin closing out my dad’s subscriptions and auto-renewing accounts before he actually died, which left me with less demands while laboring under the weight of grief and poor executive functioning. Additionally, I was able to sell two of my father’s three cars and cancel his car insurance once it was clear he would never be able to drive again. The more of these little cancellation and sales type tasks you can do prior to your loved one’s death, the shorter your to-do list will be in the weeks after they die. You will thank yourself later.

Important to keep in mind: Both the MPOA and POA are immediately cancelled upon the death of your loved one; so any arrangements you plan to make with the POA or MPOA must be done prior to their death.

The Will: Long before disaster is on the horizon, you need to talk about getting a will. I understand why people don’t want to think about wills, let alone discuss wills. It’s a reminder of mortality, it conjures big, painful feelings of anticipated loss. It triggers our fears of severed attachment and abandonment. It also can bring up feelings of contention and conflict as siblings squabble over who gets what. And perhaps worst of all, it’s expensive to get a will. I absolutely understand and have compassion for the reasons why people don’t like to talk about anything remotely smacking of wills. But I am here to tell you that having a will and making clear instructions for the disposal of your assets, your funerary arrangements, and even the custody of your children and pets will save your heirs so much stress and hassle.

* First of all, disposing of remains is expensive. We did, as per my father’s instructions, a simple cremation with no funeral service, viewing, or formal memorial services. It cost $3000. The average cost of a funeral in my area (either cremation or burial, including a casket, embalming, transportation, dressing the body, and any extras) is approximately $6500-$10500. It is worth it to go to a funeral home of your choice, and plan and pay for funeral arrangements well before death is on the horizon so that you aren’t hit with an enormous bill at the time of your loved one’s death. By sheer dumb luck, I purchased and paid for my dad’s funerary arrangements the day before he died which made the aftermath so much easier to cope with because I didn’t have to worry about paying for anything out of my own limited funds or making any last minute decisions. All I had to do was notify Hospice where to have my father’s body transferred to, and the funeral home followed the rest of the instructions in our pre-paid cremation. Another thing you will determine when pre-paying for funerary costs is how many copies of the death certificate you will need. I ordered five, just to be sure I had plenty. So far I still have all five because everyone has accepted scanned copies or faxed copies. If you do not have enough copies of the death certificate, the funeral director can order you more, so don’t stress over it.

* Secondly, the will gave clear instructions as to the dispensation of my father’s assets. He noted money that he owed to both of his brothers, and the remainder of his assets and personal effects were left to his only heir. He also made arrangements in case his heir predeceased him for the remainder of his assets to be divided equally among the children of his heir. He also stated who he wanted to be the executor of his estate. This gives the probate court a very clear idea how to divvy things up and expedites the process.

* My father’s lawyer at the time of drawing up his will also suggested the addition of a living will/advanced directive, and the MPOA and POA. So doing all of these things at the same time is an option if that makes things easier for you. The living will provided clear instructions on my father’s wishes should he require resuscitation or intubation, and we provided that documentation at each of the facilities he stayed at.

* One thing I learned about the role of the executor of the estate was that their job doesn’t really start until the estate has gone through probate. So the responsibility to contact all the accounts that need to be shut down/notified of the death fall to the heirs. If the heir is also the executor, then this won’t matter. But if you were a fool like me who pushed for your extremely functional and competent husband to be executor so you could take the time to grieve and not worry about the estate, surprise! You’ve been punked!

You will want the executor to be someone scrupulously honest and responsible, so please factor that in when you or your loved one choose to create a will.

* I have been told by other family members that one of the best ways to avoid your will having to go through the extended probate process is to set up a family trust, with the heirs being assigned the roles of trustees. My father’s lawyer did not present this option to us, and it is outside of my experience, so I cannot share details on how this works. But it is worth exploring if it can save you all the hassle of waiting indefinitely for your assets to go through probate court.

Things to do after your loved one dies

Inventory assets: This is going to be a pain. It’s one of the things you may even want to get a head start on prior to death to save yourself trouble later. In all honesty, this mainly applies to items of value. I don’t believe the courts will care that my dad had eight pair of compression stockings and over twenty Disney t-shirts. But the court will be interested in any vehicles, property, bank accounts, savings accounts, investments, insurance policies, jewelry, electronics, or furniture. That list is by no means extensive. I’m just thinking of the most common big ticket items. Unless your loved one has vintage Chanel evening gowns, they probably don’t care what’s in the closets and dressers. You will need to have a rough idea of the appraised value of things like jewelry, vehicles, antiques, etc. Remember, these items are going to count towards the estate’s total assets value which determines if this goes to probate as a small estate affidavit (less than $75K in Arizona) or a letter of personal representative (more than $75K in Arizona). If your loved one owned property, you are going to need to have the house/property appraised. The appraised amount will likely be less than the market amount, and that is fine. If the home appraises at $100K or greater (in Arizona. Remember, you will need to research the amounts and laws for your own location.) then you may wish to not file a small estate affidavit because you will have to wait six months post death to file the affidavit for the home. It would be quicker to file a letter of personal representative and have it go through the probate court that way (usually a four month wait). My understanding of the small estate affidavit and the small estate affidavit for real estate is that they are two separate animals in the sense that the less than $75K amount refers to non-property assets, and the less than $100K refers only to property assets. As my father left me no property, and his other assets did exceed $75K, I did not learn from my lawyer much about either of the small estate affidavits. I know I have repeated this before, but this blog entry should not replace legal advice.

Notify Banks: One of the biggest misconceptions I had when my dad died was that I had to talk to the lawyer first before I began notifying the banks. You don’t really have to wait. As long as you have the death certificate, you can let them know right away. Not all banks will have the same policy on how they deal with the account of the deceased. My father had accounts at two different banks. One bank can’t even begin to do anything with his account until it is thirty days post death. The other bank got everything in motion immediately. The process will differ somewhat from bank to bank, but the thing both banks will need eventually is a copy of either the official small estate affidavit after it is approved by the court, or the approved letter of personal representative once it is approved by the court. They will also want a copy of the death certificate. There may be additional forms they ask you to complete. Once you have provided the banks with all the documentation they have requested, and everything has gone through their legal process, they will set you up with a new account that has an EIN tax number instead of a social security number. The executor will distribute cash to all creditors and heirs from these accounts. Once they have completed this and the accounts are fully emptied, the bank will close the EIN account. This advice about the bank process is specific to the United States. I do not know what the bank process would be in other countries.

Notify services/cancel services: With any luck at all, you had some forewarning that the end was approaching, and you were able to cancel most subscriptions and services ahead of time. If not, now is the time to get started. I will be honest with you; out of every subscription or service I contacted, only one ever asked me for a death certificate, and none asked me for the power of attorney. It could just be a laissez faire Arizona attitude, or it may be that this is a prevailing American attitude. But it was very surprising to encounter little to no resistance from anyone in my efforts to cancel streaming subscriptions, car insurance, Amazon music subscriptions, car wash memberships, etc. My recommendation is to always bring with you documentation, whether it be power of attorney (if they are still alive), or a death certificate. That way your trip is not wasted if you encounter the one conscientious company that follows the rules. One thing that helped me to make sure I covered every recurring charge service that my dad had subscribed to was to go through his bank statements and make a list of every recurring charge. This helped me to make sure I knew specifically what monthly bills needed to be stopped. There will be some charges that are not monthly, and you may miss them while doing inventory. That’s okay. That’s part of why the probate court has a four month minimum delay on paying out the deceased’s bank accounts; it is to allow businesses to see the notice in a special newspaper put out by the courts that lists those individual’s estates going through probate, so they can identify themselves to get paid once the assets are no longer frozen.

Self Care: You are going to need to be gentle with yourself and take a lot of breaks. This whole process requires enormous amounts of executive functioning, and it is being demanded of you at the worst possible time while you are struggling to process your grief.

Neurodivergent grief: Neurodivergent grief does not look like neurotypical grief. While some of us may cry and appreciate the condolences and comfort of our friends and family, a lot of neurodivergent people are more like wounded animals. We mask our pain with flat affectation, and we isolate to protect ourselves from having to interact with and be overstimulated by the good intentions of others. We may have alexithymia and not even recognize that we are depressed or grieving. My alexithymia impacts me only in feelings of grief and depression. If I am feeling a strange emptiness in my chest, almost as though it were a physical sensation, that is usually my first clue that I have become depressed. You may also manifest your depression and grief through poor executive functioning, greater sensory sensitivities, and more exacerbated anxiety responses. My demand avoidance is off the charts right now. I struggle with a fair amount of demand avoidance anyways as part of my PDA, but right now my brain is registering eating as a threat. I am reduced to maybe a handful of saltine crackers every four to five hours. Drinking water is also apparently a threat, as I am managing only 3 of the six bottles I am supposed to drink daily to keep my medicine from hurting my kidneys. I am spending a lot of time sleeping during the day when I should be doing; and I spend a lot of time staring into the void at night when I should be sleeping. I am trying to honor my grief journey where it is right now. So when I need to lay in bed all day, I lay in bed all day. When I want to be left alone, my spouse tries to keep the children away from me so that my sensory environment is not stimulating. I keep a running list of what needs to be done, and what the urgency/importance of each task is, and I try to do them in clusters when my spoons are higher. Sometimes it can’t be helped and I have to do them when I feel like a bitter, burned out husk. But I try to give myself a lot of time and space to recover when I am forced to do something I don’t feel up to doing.

Jump start your dopamine: Right now you are in survival mode. You have enormous amounts of soul sucking, high executive functioning tasks to complete in a short period of time. Now is not the time to be implementing long term strategies for better self care; right now you need field triage to staunch the gaping chest wound you received when death took your loved one and gifted you with all these important tasks to complete in short order. You will definitely want to focus on healthy, long term, self care goals in the near future, but right now while you are in crisis, you need dopamine to jump start your executive functioning, and you need it fast. Your brain and body are going to be asking you for more dopamine stimulating activities. Now is a good time to indulge in the music that gets your blood pumping. It’s not the time to be worrying about whether those Oreos are on your diet. It is definitely the time to binge watch that fantasy series you have been meaning to watch. This probably sounds counterintuitive, but you need a significant boost of dopamine to jump start your executive functioning and overcome the inertia you are feeling from depression and exhaustion. So indulge yourself when you have down time. And when you feel like you might be able to do something, jump up and start doing it. Some of these tasks may even start generating dopamine on their own as you get the satisfaction of checking another task off your list. I am not advocating overindulgence or engaging in risky activities to boost dopamine. I am suggesting using known, safe indulgences in the short term to help get the dopamine flowing so you can get the start switch flipped on with your executive functioning. So no, do not snort coke or smoke meth so you can get things done. I should not even have to say that.

Feel the feelings: While it is tempting to just keep shoving those unpleasant grief feelings down into the mud of your subconscious, you will feel better in the long run if you start letting yourself feel and experience your grief. I find I get very overwhelmed quickly by my feelings, so I have been trying to let mine out in short, cathartic bursts. Giving myself five minute crying breaks every few hours where I am allowed to sob without restraint for five minutes at a time helps me deal with the sensory overwhelm crying gives me. Since it is actually harder for me to get myself to cry than it is for me to stop crying, this method works well for me. I also like talking (either out loud or in my head) to my dad’s imagined ghost. I tell him the things I wanted to say while he was alive, but I couldn’t. I yell at him for leaving his finances in such a confusing and messy state for me to have to sort out. I ask him if he sees my mom and my ex-husband out there where all the ghosts live. It’s not like I expect a response. The point is that I am getting to process my feelings out loud. It helps me see areas where I am holding hidden pain. It helps me to cry. For me, it’s a lot like the benefits I get from therapy, but without having to actually be vulnerable in front of a stranger, which is not a fear I am ready to work on yet. It doesn’t have to be talking out loud to an imagined ghost. You can help yourself in the same way through journaling, art, breath work, yoga, etc. The point is to help get out of your own head and be able to feel and view your emotions and struggles more clearly. It’s far too easy to intellectualize your feelings and never actually experience and feel them. I think for a lot of neurodivergent people, that is our default. We spend so much time analyzing our world and trying to figure out how navigate unwritten social rules and survive society that we become very stuck in our heads. We need to also learn how to navigate our own inner worlds, or those unexpressed feelings fester and hurt us.

Get Counseling: If you can afford it, get grief counseling. In the United States, if your loved one uses Hospice to ease their transition to death, you will get a year of free grief counseling. Take advantage of that. I do stand by the advice I gave above, but nothing can replace the guidance of a good, trusted counselor or social worker who can help you specifically navigate grief. That being said, be aware that for many neurodivergent people, cognitive behavioral therapy (CBT) can be very disappointing and increase your feelings of being gaslit and frustrated. CBT can be very helpful if 1) you do not know how your own behavior is contributing to your struggles, and 2) if your struggles are not being caused by the innate differences and challenges of having a neurodivergent neurology. CBT often takes the attitude of “Now that you know how your behavior has contributed to the escalation of this problem, you are empowered to change it!” But if it is your sensory sensitivities causing the struggle, or poor executive functioning, situational muteness, or any number of neurologically based neurodivergent struggles, you cannot solve this problem by willing yourself to do differently in the future. Force of will cannot make a neurodivergent person neurotypical, and no change that relies on force of will alone to continue it in perpetuity will ever be successful without exacting a terrible toll on the person doing it. If the counselors you interview or who are available to you do not feel like a good fit, check around locally and online to see if there are grief support groups, or if there are telehealth counselors available. It can be hard to find a good counselor, but they are out there. Try not to get discouraged by the search, and remember you do have other tools available that can help you navigate the grieving process alone. When all the tasks are complete

Learn to let go: As you run yourself ragged jumping through the arbitrary hoops of society, probate court, and the whole settling of the estate process, you will probably build up a frenetic and hyper momentum of Do! Do! Do! and you may even start counting on the dopamine of getting tasks done to help you get through your day. There comes a point where that has to stop. It’s hard to imagine, but there will come a point where you have checked off every task on the list, and now you have to sit in the emptiness of your new, less hectic normal. Learn to let go and not freak out when not doing. Continue with your self care, but instead of dopamine binging, start slowly introducing healthy self care replacements into the space where all your tasks used to reside. This is even more important if you were devoting a huge part of your life to caring for your loved one before their death. Go to the gym or take up hiking: you have the time to do that now. Take that class on scrapbooking if that's your idea of a relaxing hobby. Go to grad school and finish that degree you started back in 2006. Dive deep down the rabbit hole exploring Japanese culture in the Meiji era. Just start doing things slowly that will replace all the time and energy you poured into your loved one and their estate with deliberate actions to better your life. The point is not to cram as much into the empty space left behind as you possibly can; the point is to mindfully enrich your life in ways you could not do so before because you were too busy. And it is okay to take your time deciding what to fill the space with. You don’t even have to fill that space. You can slowly and organically watch that space begin to fill with new routines and special interests. But be mindful-make sure you only nurture the activities and goals that are nourishing to your being. The pain of losing someone you love, followed by the stress of being subjected to confusing demands that are urgent, can make you feel almost desperate to fill that space with anything just to numb the aching sense of loss. Don’t fall for that. There is nothing that can fill the Dad shaped hole in me. I will carry that wound forever. It will gradually scab over and knit together in an ugly scar that hurts less with time. Whether that scar festers beneath the skin or continues to heal will depend on the work I put in right now to deal with these feelings and the choices I make about my life going forward. I have just spent the better part of a decade keeping my dad alive. It started with frequent visits and phone calls, and progressed to full time 24/7 elder care in my home over the space of about six years. Dad took up a lot of real estate in my life. I love him so much, and I am so glad that I had him in my life as long as I did. His sudden absence from the landscape of my daily life has left me with so much free time that I have no idea how to cope. I do not know what it looks like anymore to be free to use my time for myself. But I know that I don’t want to fill that time with just more busy-ness. I want to take the time to think about what aspects of myself have been neglected, and how can I make my happiness and wellbeing a priority for me? I know I can’t just throw dopamine seeking behaviors into the Dad shaped hole in me and find peace and healing. Take time to make informed, well thought decisions about who you want your healed self to be. I hope that for those of you dealing with loss and the stress of having to settle your loved one’s estate that this information has some benefit. It is by no means a complete guide, or even the best guide. It is my journey and the knowledge I have learned along the way so far. There is a lot of room for improvement, and I hope in particular to expand this further to have more practical advice for those who have limited financial means. As stated many times before, this is not intended in any way to replace actual legal advice. I am neither a lawyer, nor a professional counselor or social worker. I encourage my readers to consult with professionals for their legal and their therapeutic needs.