Autism and Grief Episode Transcript

HOLLY IGNATOWSKI: Welcome to the Remembering a Life podcast. I'm your host Holly Ignatowski. April is National Autism Month and today we're going to talk about how autism might affect a person's grief and loss journey. My guests are Dr. Kenneth Doka and Lisa Morgan.

Dr. Doka is a Professor Emeritus at the Graduate School of the College of New Rochelle, and Senior Vice President for grief programs for the Hospice Foundation of America. He is a recipient of the International Center for Loss Bereavement, Loss and Human Resilience, and Israeli Bereavement's Herman Fiefel Award for Lifetime Contributions to the field of thanatology as well as the Lifetime Achievement Award from Association for Deaf Education and Counseling.

Lisa Morgan is a certified autism specialist, consultant, speaker, and personal trainer. She is a certified autism specialist and advocate of the autism community with regard to crisis support, suicide prevention, and postvention. Lisa is Founder and Co-Chair of the Autism and Suicide Committee of the American Association of Suicidology and author of Crisis Supports for the Autism Community. She is a subject matter expert as an autistic adult with lived experience in the field of suicidology, as a suicide loss survivor, co-researcher, teacher/trainer, and speaker.

Dr. Doka and Lisa, thank you so much for joining me and welcome to the program.

DR. DOKA: Delighted to be here.

LISA MORGAN: Yes, thank you. Glad to be here.

HOLLY IGNATOWSKI: Lisa, I'll start with you. Of course, autism is a very broad and complex topic, but is it possible for you to give us a brief overview of autism?

LISA MORGAN: Sure. Firstly, I like to say is, in order to be autistic, one has to have an autistic brain. MRIs have shown that autistic brains differ in nerve circuitry functioning. And so typically, social communication deficit and adherence to routine, but it is a social communication condition where, you know, autistic people typically just think, experience, and communicate differently than non-autistic people.

HOLLY IGNATOWSKI: And how common is autism? Well,

LISA MORGAN: Well, the CDC just came out with, for children, 1 in 36 kids have autism. And for adults, the last statistic to come out is 1 in 45, but of course, all of those children will grow up to be autistic adults.

HOLLY IGNATOWSKI: Right. What drew each of you to become involved in helping people with autism navigate grief and loss? Dr. Doka, I'll begin with you, please.

DR. DOKA: Well, as Vice President of Hospice Foundation of America, I was involved in a program that looked at intellectual disabilities and grief. And I think that Hospice Foundation has always been interested in trying to create opportunities for other populations who are not normally served by those who are grief counselors. And so it was natural that we eventually applied for a grant and received one from the NLM foundation to work with autism.

And again, it's part of the Hospice Foundation of America's interests to increase end-of-life services, both in hospice and in grief for populations, for a wide variety of populations, some of which are not neurotypical.

HOLLY IGNATOWSKI: And Lisa, how about you?

LISA MORGAN: What got me interested in this topic is really my own grief. I lost several people in my family, but most recently, my husband in 2015, and just those experiences I had afterwards really got me into advocating for autistic people. And grief is and loss as part of that.

HOLLY IGNATOWSKI: Grief can be really complex and difficult for anyone who's experiencing a loss. Can you explain how might a person with autism experienced grief differently? Why would their journey be unique? Lisa?

LISA MORGAN: Well, I guess first and foremost, autistic people experience their emotions differently, and along with processing speeds, so someone may not – upon hearing news, they may not react in what may be typical, for lack of a better word. So they may not have any reaction for a while as they're processing the news.

And then they may have emotions later, they may have emotions that are different, for instance, laughing. But then what happens, there's a judgement, and then feelings of, you know, inadequacy and validation and that they've done it wrong, instead of really kind of being able to just do it in whatever way they're actually feeling in the moment.

HOLLY IGNATOWSKI: And do you have some advice for how people can best support someone with autism who is grieving a loss?

LISA MORGAN: Yeah, sure, just let them be, you know, in the moment who they need to be, and understand that, you know, anything that they express in the moment is going to be how they feel, and it may not look typical, it may not look like everybody's used to, but just allowing that to be okay is very supportive.

HOLLY IGNATOWSKI: And Ken, let's talk about the funeral experience. How might a person with autism experience an actual funeral? What are some of the challenges or questions that might come up there?

DR. DOKA: Well, I mean, it's an – it's a very new experience, if it's their first funeral. It may be a very kind of troubling experience, a lot of people coming up to you, a lot of different kind of sensory experiences.

So I think it helps, first of all, to prepare them on what to expect to help the anxiety and stress that comes with these kinds of situations to dissipate a little bit, train them as what might happen and create a plan for what might happen, rehearse maybe a little bit. Maybe a trusted person can provide support. And then, of course, always look after, and say what worked and what didn't, and what can we use in the future?

But again, I think the important thing is to allow them choice as well as to whether they want to go to the funeral, or what parts of the funeral they would want to go to and again, respect their autonomy, respect the fact that this may be a very troubling experience for them, and don't push them to do things that are not comfortable for them.

HOLLY IGNATOWSKI: Lisa, did you have anything to add to that?

LISA MORGAN: Yeah, I totally agree with everything that Ken just said, especially with the sensory environment, because you have certain clothes that need to be worn to funerals, that may me uncomfortable. All the emotions that are going on at a funeral, which may be uncomfortable, and then just not really understanding the traditions.

And for autistic people, things kind of need to make sense. And the traditions may not make sense just for the sake of being traditions. They may need kind of like, some education around why people are doing the certain aspects of a funeral. And there's just a certain – steps to take, and – you know, the whole process. They may need to understand the "why" behind it a little bit more so they can participate as much as they, you know, want to or feel that they can.

HOLLY IGNATOWSKI: Lisa, in your bio, you say that you are a suicide last survivor, and you are quoted as saying, "Understanding autism and the culture of autistic people, so autistic people do not have to mask or camouflage their autism, is suicide prevention." Can you explain that further? What do you mean by that?

LISA MORGAN: So yes, I am a suicide loos survivor of my nephew in 2015 and my husband three months later in 2015. And what I mean by that quote is, if autistic people are allowed, and allowed, I mean, given space to, without judgment or questioning, and still, you know, be able to be themselves.

So you know, no pressure or anything like that, to be who they are as autistic people, with the culture being that they can stim if they need to, or they can pace if they need to, or they can wear the clothes that feel okay to them if they need to, whatever part they might need to do to help their autistic selves, if that's accepted, so they don't have to mask.

So what masking is, it's a social strategy to fit in, where they suppress all sensory stimulation in the environment. They suppress any emotions they're feeling, they put faces on like everybody else's face, whether it's smiling or frowning. They try to keep up with conversation they don't necessarily understand or are interested in.

So they're doing a lot of things just to make themselves appear like everyone else. It's exhausting. And—but they do it as a social strategy to fit in. If they could just be themselves, that would be so much better because actually masking has been shown to be – have a negative effect on mental health for autistic people.

HOLLY IGNATOWSKI: And the death of a loved one, even if there's a prolonged illness, there's always some form of preparation. You can kind of get yourself ready for it even though you're never fully prepared, but the loss of a loved one from suicide or other sudden death is very difficult. And how do you help an individual with autism get through that suddenness?

LISA MORGAN: Yeah, so change is very difficult for autistic people. So both the uncertainty of a loved one dying, you know, like, through hospice or something, and – as well as suddenly, through suicide or a car accident or something, you have uncertainty, you have change. And the best thing to do is to give them – again, just really give them space to regulate, to help them to understand as much as they can about what's happened. To make things as usual as possible, if you can, for them, to kind of take away a little bit of that angst from the change would all be supportive.

HOLLY IGNATOWSKI: You were both involved in the creation of a very helpful website about autism and grief, autismandgrief.org. It provides resources for autistic adults, family, friends, and support people, and also clergy and other professionals. Ken, can you talk about why the Hospice Foundation of America and the NLM Family Foundation came together to create this website in the first place?

DR. DOKA: Well, yeah, it was a very simple reason for that, really. As the Family Foundation found, there's a lot of material on children with autism, but much less on autistic adults. So they felt that, while there was a lot of work out there, and a lot of information available on helping children with autism manage grief, there was very little for adults. We partnered with them to create a website that would have that kind of information.

And I think we're very proud. I'm very happy. And I think the NLM Family Foundation is also very happy with the product that was produced. It's really a website that has extremely useful material. It has little snippets of animation, for audiences, to kind of explain some of the information they're trying to convey. It's got a series of different resources. And I think it's going to be immensely helpful, especially for the population of autistic adults and the people who care about them, both family and professionals.

HOLLY IGNATOWSKI: So Lisa, on the website, there are social stories about grief for adults that are very helpful. Can you talk a little bit about those stories?

LISA MORGAN: Sure. So they are social stories that take on different aspects or things that may be happening around funerals and death. And does tell the story about what may happen. And it has the visuals, it has the – you know, characters playing out the stories, and it really helps to bring home just really abstract ideas.

DR. DOKA: Yeah. Yeah, and I would add that, that sometimes, if you're reading these to someone, it suggests that you really personalize it. So instead of using the name in a story, you may use the name of somebody more appropriate in life for that person. They're just really good, solid tools for helping people maybe verbalize or conceptualize some of the concepts that we're trying to pursue here and explain.

HOLLY IGNATOWSKI: The President and CEO of the Hospice Foundation of America, Amy Tucci, said of the website, that "it will dispel any preconceived notion that adults with autism do not grieve. Autistic adults grieve loss deeply, but their reactions may appear different from those of the neurotypical population. Consequently, they're more likely to be misunderstood, and inadequately supported in grief."

And Lisa, I think you touched on this as well. Do you feel that there is that idea, that myth out there that autistic people just don't grieve, because it doesn't look like what the "neurotypical person" does?

LISA MORGAN: Yeah, I do think that there is a stigma out there about that, yes. You know, the very first loss I had was my grandmother. I was a teenager, and I didn't cry like the rest of my family did, right away when we got the news. So I was asked if I even loved her. And know, of course I did, I was just experiencing the news and – you know, beginning to experience the loss differently than the rest of my family.

So you know, there is just a very big difference in how autistic people can experience it.

HOLLY IGNATOWSKI: And the site is specifically for adults. Now, you mentioned that there were a lot of resources for autistic children, Where would people find those resources?

DR. DOKA: I'm sure you could just Google "children with autism and grief" and a number of things would come up.

HOLLY IGNATOWSKI: What are some of the resources available on the autismandgrief.org website that people could use? What are the features they'll find there? How can they effectively use that site?

DR. DOKA: Well on our sites, as you get on, you'll basically see different – like, I don't know what you'd call them on the web, but essentially different pathways, one for autistic adults, one for clergy and professionals, and one to family members. And then you can just follow through.

And as I said, there's –there's information, there's resources, there's all kinds of things that you can find on that website that are – that would be very, very useful.

LISA MORGAN: Yeah, there's social stories, there's animations. So you get the information in different ways, which is really good for autistic people.

HOLLY IGNATOWSKI: Wonderful. Lisa, your bio states that you are an autistic adult. Why did you choose to focus on grief and loss in the autistic community?

LISA MORGAN: Well, I do focus on, you know, even crisis support, so - which is itself part of it, because they're very similar. But it was because of after I lost, in particular, my husband, the experience I had was this – it was extreme. It was extremely overwhelming, and I had no support, really, and the support that I did have kind of misunderstood what I needed.

And then I did have a – you know, a – like a network of support people before my husband die, but then afterwards, they didn't know really what to do. So they kind of disappeared from my life, and I had new people, which for autistic people. It's difficult to exchange people like that very quickly, at all.

So in many ways, I was left alone, and I just didn't want other autistic people to experience that.

HOLLY IGNATOWSKI: What would you like people to take away from this podcast to learn about autistic people and the process of grieving and loss?

LISA MORGAN: Well, for me, something we haven't touched upon yet is non-death losses. And so it could be a therapy pet, it could be an object for an autistic person. It could be something that keeps them regulated, and they may have lost it, which actually does cause grief. And I think it's misunderstood, the level of grief, something like that might cause for an autistic person.

And I do think to be very supportive, it needs to be understood that it can be just as devastating as a – you know, a person loss as a non-death loss.

DR. DOKA: Yeah, and if I could add, I think it's also important to recognize that every grief, for anybody, grief is a very, very individual journey. So the key issue is, I think, you know, to recognize that different populations may have different issues that they struggle with, but that everybody's journey is really unique and -- and distinct and different.

None of us grieve in the same way. You know, long ago, we've abandoned the notion that you go through various stages. We really look at it as a very, very individual process and everybody finds their unique pathway. That might have complications with non-neurotypical populations. But again, loss affects everybody and everybody grieves in their own unique way.

LISA MORGAN: Yeah, and the website, autismandgrief.org, that website really does capture all of these issues that we're talking about right now, the non-death losses, the difficulties with funerals, and you know, traditions and what traditions autistic people may have or like to do.

I mean, it just really was a lot of information that was missing for me, that's –that's out there right now. So that's, that's really a good thing.

HOLLY IGNATOWSKI: And one of the features listed for the website is advice for communicating the news of death to an autistic person. Lisa, can you explain that? How do we go about doing that?

LISA MORGAN: I think it would be very individualistic. For autistic people, it would depend on, you know, what death it is, what loss it is, and how the person – you know, their processing speed, how they handle emotions. So yeah, it would really depend on the person.

HOLLY IGNATOWSKI: And how can we continue to be there for that autistic person in our life? As you said earlier, sometimes, you know, the change is difficult and someone might be there and then not there after the funeral. So how can we continue to be there for our loved ones in the autistic community after the death of a loved one?

LISA MORGAN: Yeah, so the best way to support an autistic person that way is to make sure as much as possible can stay the same. So their schedule – the schedule can stay the same as much as possible, depending on the person who has died, you know, on what effect they had on the schedule, but keeping as much as possible the same.

And the reason why change is so difficult for autistic people is because autistic people tend to need to plan ahead to know what's happening. And so what happens when change happens is they don't know that anymore. So also giving them all kinds of information about what might be happening next, you know, as far as out as you can, just like kind of supporting them around their schedule and what's going to happen in their lives as much as possible, walking them through the funeral if there is going to be one, the wake if there is going to be one, giving them as much information as possible about what might be coming next would be supportive.

HOLLY IGNATOWSKI: I ask all my guests this question, and I'll start with you, Ken. Who are you remembering today?

DR. DOKA: Who am I remembering today? Well, unfortunately, aa longtime companion of mine, Kathy died. So she's been on my mind, especially during the Easter time, the first holiday we haven't spent together.

HOLLY IGNATOWSKI: Lisa?

LISA MORGAN: Today I'm remember my father-in-law. He passed away just a couple of days ago.

HOLLY IGNATOWSKI: I'm sorry to hear that.
Thank you so much, Ken and Lisa, for joining me today for this important discussion shedding light on the grief journey for people with autism. Thanks so much.

DR. DOKA: Thank you for having us.

LISA MORGAN: Thanks very much.

HOLLY IGNATOWSKI: To learn more about grief and autism, visit griefandautism.org. And to learn more about meaningful ways to remember loved ones visit rememberingalife.com.