“Autistic Grief Is Not Like Neurotypical Grief”
That’s the name of an article written by Karla Fisher, author of the WikiSpace site called ASDCulture.
As I read quite a few comments at Wrong Planet about grief, I realized more and more how right she is.
One of the Thrive with Aspergers/Autism community members recently asked me to make a podcast episode about the topic of grief, bereavement, and autism.
In this article/episode, I’ll be speaking more specifically about a type of grief, which is the pain of losing a friend, a pet, or a relative.
Everyone is going to lose someone at some point in this life.
And everyone experiences grief differently.
There are different models of grief.
The most common model of grief I’ve learned is the 5 stages of grief model, by Elisabeth Kübler-Ross.
The five stages, denial, anger, bargaining, depression and acceptance are a part of the framework that makes up our learning to live with the one we lost. They are tools to help us frame and identify what we may be feeling. But they are not stops on some linear timeline in grief. Not everyone goes through all of them or in a prescribed order. Our hope is that with these stages comes the knowledge of grief ‘s terrain, making us better equipped to cope with life and loss. At times, people in grief will often report more stages. Just remember your grief is an unique as you are. Source – grief.com
The goal of this episode is to help us better understand how grief may be experienced differently by someone on the autism spectrum.
I’ll also include some coping tips from adults on the autism spectrum.
Emotional Expressions of Grief in Autism
As I read about autism and grief in WrongPlanet Aspergers members’ comments, many of them talked about difficulty identifying emotions associated with grief. A good number of them also talked about not feeling grief at all.
One member wrote,
Not a specialist, but I think that people with autistic spectrum disorders have increased risk of the so-called unresolved or delayed grief – because of the alexithymia and the somewhat flattened affect – which potentially might have long-term consequences. Also, higher risk of precipitating a major depressive episode. But it is a risk, not a definitive outcome.
Another member wrote about delayed feelings:
“When my grandfather died, I felt nothing for a whole year and then one day it hit me. I didn’t know that had a name.”
And yet another member wrote this:
I think that a lot of my emotional non-processing is due to sensory processing jumbles.
Basically, I can’t tell the difference between a “feeling” that is caused by sensory inputs and “feelings” that are representative of emotional states. Similarly, I can see how emotional states can precipitate sensory disorder, such as uncomfortable levels of sensitivity.
I also notice that it takes a looooong time, sometimes years, for me to effectively process emotional stress or traumatic situations.
I am also waaay off the end of the charts on the systematic thinking spectrum, which is about as useful for emotional processing as, uh… you think of a metaphor. Basically emotions are not logical.
Expressions of Grief: Increased Behaviors and Interests, Cognitive Effects
“My problem is that since my father’s death I have been having major audio/visual hyper sensory issues. I am also stimming like mad now. Pacing, rocking, all the good things. I assume it is a grief management thing due to the correlation of the incidents.” Wrong Planet member, Aspergian.
I’m sharing the following possible expressions of grief via the Indiana Resource for Autism.
In this section, you’ll see grief responses that may be similar to responses of non-autistics.
Autistics and non-autistics are all human, so there will be expressions that overlap.
Be on the lookout for these effects, as they may help you better understand that what you or a loved one is normal to the grieving process.
Emotional Responses –
• May become angry
• May become aggressive and demanding
• May be very anxious
• May cry a lot
• May withdraw and become unresponsive
• May appear very calm: either seemingly unconcerned or totally in control
• May act out physically throwing things or destroying property
• May hurt themselves or others
• May have an increase in repetitive or self-stimulatory behaviors
• May be very irritable
• May want to be alone
• May experience regression and loss of skills
Possible Physical Behaviors
• May have a loss of appetite
• May not sleep well
• May have a harder time with grooming and other hygiene routines
• May experience various body aches
• May experience fatigue
• May experience loss of bowel and bladder control
• Sensory overload may intensify
Grief and Bereavement – Timing and Expression Differences on the Spectrum
Here I’m going to relay what I’ve read or heard from different forums and blogs.
The expression of grief may seem confusing to those who don’t understand emotional differences of the autism spectrum.
For example, an autistic individual may feel intense grief yet laugh uncontrollably. Don’t misjudge this person! Emotional confusion is just part of what this person is going through.
Dr. Tony Attwood described a boy who had lost his father. He kept asking detailed questions about what had happened to his father, and he paced a lot.
The detailed questions were his way of trying to “make sense” of a massive disruption in his life.
Other Aspergians or autistics are uncomfortable with expressing feelings, and may seem “disconnected.” An insensitive or uneducated “neurotypical” would say that person is insensitive or uncaring. They don’t understand that Aspegians and autistics feel very deeply.
Coping Tips from the Autistics for Autistics
I’m borrowing the following coping tips from Wrong Planet members and from Karla Fisher, who wrote the article, Autistic Grief Is Not Like Neurotypical Grief.
1. I try to RELAX. I do not feel pressured by other people’s ideas of the “correct” grieving process, eg. crying. Crying just makes my eyeballs hurt, though I do cry randomly while watching movies. I do not feel defective or anxious that I experience life differently.
Alexithymia is NOT the same as avoidance, or repression, or PTSD, or being psychologically damaged. It is neurological: brain wiring, not mind content.
I try to learn how my own brain functions, so I can work with it. This is very important, especially as I am only recently acknowledging/discovering my AS label. I read widely; I think which dimensions really do fit me; I develop ideas that work for my life.
2. I allow engagement in physical activity eg. exercise, stimming, whatever it’s called (*as long as these are not injurious*). These activities are not stupid, nor backward. They are the way that my body processes data. I seek new activities eg. swimming, rollerskating, dancing to loud music, which give me socially acceptable movement opportunities. I also take practical and constructive steps to deal with my sensory sensitivities such as noise, like using earplugs to reduce distraction, and making sure that I have time out. The goal is to make a deliberate choice to move, rather than unconsciously or habitually stimming.
3. I make sure that I have one good friend who I check in with, weekly. This friend gets a regularly updated picture of my ok-ness, and gives me perspective. I talk to a counselor when I think I need new ideas. I don’t have to accept *everything* a medical practitioner says about me, though I do take notice.
4. Routines can be very useful when I am feeling agitated or over sensitive.
Here are coping tips from Karla Fisher.
Things That May Help…
- Taking care of the physical part of the body (nutrition, sleep and exercise).
- Alone time.
- Learning about ASD symptoms (increased awareness about sensory issues and taking care to avoid triggers).
- Time spent with obsession.
- Getting involved in viable projects (focusing on helping others).
- Setting realistic goals/expectations for recovery (grieving symptoms can last for longer than 1 year).
- Discovering/exploring new areas of interest or special interests. Many people with ASD are avid explorers or wanderers. Take some time to explore or wander. Take up an instrument or new language, etc. Learning helps to calm and to process feelings.
- Understanding that your way of grieving is not like everyone else’s (the NT world) and that your way is just as valid.
For Therapists and Caregivers/Loved Ones:
- Make sure the ASD person is taking care of the physical part (nutrition, sleep and exercise).
- Give space.
- Understand that they may not want to speak of feelings or even be aware of them.
- Teach about ASD symptoms and symptom management versus focusing on feelings or talking about feelings.
- Send clients to research ASD cultures and send them to places such as Wrong Planet to make discoveries about themselves as a person with ASD. Just like NTs, people with ASD like to share things like this, but our language will sometimes be sufficiently different that we will find comfort only within our own kind. (We can speak more bluntly about things like death for example.)
- Validate their way of grieving (not crying at a funeral does not make them a monster)
- Allow more time to process information (keep concepts/data minimal). Some sources recommend two to three times the amount of time for CBT than an NT client needs.
- Encourage special projects and/or involvement in activities that are related to special interests. People on the spectrum are often helped by focusing on learning/doing.
- Learn where the autistic person’s emotional and relationship understanding currently are and teach from that, rather than from the currently existing NT models. If the person cannot articulate their own model, begin with the ones in this article as an example and then show the NT models. Encourage them to start talking about how they relate with respect to these two models. This will start the process. From here, work can be done to increase emotional language and awareness.
- Encourage exploring or wandering.
In Closing …
Grief is experienced universally.
We’re all human.
However, autistics and Aspergians may process it differently.
I can’t put it any better than Karla Fisher, so I’m going to quote her words here:
ASD Grief Things to Think About
May or may not cry or overtly show emotions. Alternatively, emotions may be delayed or very extreme when they do come.
Grieving will very possibly manifest itself via increased ASD symptoms (increased sensory processing issues, shutdowns, meltdowns, decreased social abilities, etc.).
May be unable to articulate what is wrong or talk about feelings.
Increased desire to be alone to work things out (this is opposite of most NTs who will feel better by sharing how they feel).
May not relate to many emotional or relational concepts designed by NTs.
Sources Cited and Suggested Reading
Autistic Grief Is not Like Neurotypical Grief, Thinking Person’s Guide to Autism, author Karla Fisher (article).
Interesting article by Cynthia Kim at Musings of an Aspie blog, Sadness
How People with Autism Grieve, and How To Help, by Deborah Lipsky (Deborah herself is Aspergian).
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