Kit does not do well with abstract ideas.
She never has.
This lack of abstract thinking is not limited only to Autistic minds. The concept of time is a good example. Toddlers and preschoolers in general have a very limited understanding of time, and that is part of what makes waiting so hard. Waiting is scary when you can't tell the difference between five minutes and forty, so everything feels like forty!
But what about an even scarier abstract concept? One where people go away and never come back no matter how long you wait?
You might not think death to be an abstract concept. To most adults the concept seems quite factual and concrete, at least the understanding that the person is no longer there with us and that they are not going to be back. But to young children, it might just be the most abstract concept they have ever encountered.
To many young kids, death can seem scary. To some, their only exposure to the concept is in terms of technology. Our cell phone "died", we need to plug it in and voila! It works again. This can make death even more confusing. To a child on the autism spectrum, who thinks very firmly in black and white, yes and no, concrete ideas, it can be frustratingly difficult to grasp.
Thankfully, in our case, we had some prior experiences with death on a less intense level (two of our parakeets in fact) that opened up the way a little for Kit to be better prepared to receive the news that Grandpa had died. As in knowing that when a living creature dies, it no longer breaths, moves, nor comes back after leaving.
Without trying to sound morbid, it actually was a subject I had given real thought to multiple times over the past year precisely because I wanted to be better prepared to help her understand.
* * *
Grandpa's death was sudden and unexpected. We took him to the hospital thinking he would get much needed fluids, possibly medicine, and some rest. But we were expecting that he would stabilize and we could bring him home. That was not to be. He passed away peacefully in his sleep in the middle of that night.
The following morning, while Victor was at the hospital taking care of things, I told each of the big kids separately and stayed with them and listened while they talked through their reactions. Sadly, this was not their first experience loosing a loved one, but thankfully it was much easier to adjust to and wrap the mind around and far less painful than the first one. They handled it very well, in part because they both were glad that he wouldn't have to go live in a nursing home now, that he was able to finish out his life in our home with people who loved him.
I did make a request of each of them when they were ready to move forward with the day. I asked them not to talk about it in front of Kit, and to especially not mention that he fell asleep and did not wake back up as that could truly frighten her. They agreed.
As odd as it might sound, we did not have a funeral service. He had not wanted one. All of the immediate family said goodbye in their own way, and the rest of his family were too far away and many are suffering from health problems of their own.
By not having to deal with the pressures of a funeral it made the sudden absence easier for Kit to handle because things here at home remained fairly calm. We decided to wait a little while to explain to her that he in fact had died. To introduce his sudden absence we told her that Daddy had to take him to the hospital because he had gotten sick, and that he was not going to live with us anymore.
This was a lot for her to process, and she asked me to tell her again multiple times over the next couple of weeks. I felt it especially important that she become accustomed to his absence first, instead of spending those first few tender weeks uttering the words "Grandpa died" on echolalic repeat as she processed this huge change.
I think that was a good decision. For us. That may not be feasible for larger families whose loved one was also deeply rooted in an extended family and community, and a funeral is a way for all to come together to support one another while grieving.
But for us, and for Kit, waiting helped. She struggled with the sudden change. We saw rapid behavioral changes, and more difficulty all around in generally being able to cope with life. We didn't think burdening her with the concept of death would have been good for her right then. Especially not when over the course of the following weeks more household changes occurred.
Zak moved into Grandpa's old room after about two weeks. We were able to begin attending both our weekly meetings at the Kingdom Hall all together as a family for the first time in close to a year. My practice sessions for the orchesta of which I am a member began rehearsing more often building up to once a week, which means on most Monday evenings I am gone from late afternoon until well past bedtime. And the big kids started with a music program two days a week right about then as well. That is tons of change for someone who doesn't like change.
* * *
After about a month, she was beginning to settle and I was sort of waiting for a natural opportunity to arise to be able to address it with Kit. All that time gave me plenty of practice at what I thought best to tell her.
It arrived via a casual conversation with Grace which I knew Kit was half listening to (she is always listening even though she doesn't seem like she is). Grace asked a question which required a time reference related to Grandpa's dying. So I answered and included for reference "before Grandpa died".
"Grandpa died?!" Kit was now fully engaged in the conversation.
"Yes, Grandpa died."
She asked the same question several more times, but I could tell she was searching for more, for words she has trouble finding because they are abstract to her. Why and How and What happened?
So I knew it was time to explain further.
I explained that Grandpa's heart stopped beating and that he stopped breathing, and that means that he died. He was not alive like we are anymore. I said his heart was not strong like hers, and his body was not strong like hers and mine and that they stopped working.
She repeated everything back to me as I said it. I had to repeat several parts. And then she got distracted by a toy and ran off.
It has now been two months since he died. She hasn't asked about him again since that last conversation. Until this week.
She asked Victor while they were getting ready to read her bedtime story, "Where's Grandpa?"
He said it took him my surprise, but then he told her, "Grandpa died."
"Yes, he died. Daddy had to take him to the hospital because he got very sick and he died. So that is why he is not here any more. But we will see him again in Paradise."
"Oh, okay." And she was ready for her story.
Her behavior has shown great improvement. I take this as a sign that to whatever degree she is capable, she has worked through the change, and has replaced what could have been scary and incomprehensible into tangible facts that she can comprehend and digest.
* * *
I don't think there is one right way to explain death to any child, especially an autistic one when they are very young. I do think there are some very important Dos and Don'ts.
DON'T tell your concrete thinker that death is like sleep. That can terrify them and create sleep issues.
DON'T lie. Waiting is ok. Easing into the subject is fine. Giving them small doses of information and letting them absorb it slowly is perfectly acceptable. But don't lie. When they find out the truth it will damage their trust in you.
DON'T automatically assume that because they do not react that they do not understand. It can take a long time to process, but they will, and they will need you to be there to answer questions when they are ready.
DON'T assume that because they do not cry or seem to mourn that they are not feeling sad or grieving. Behavior is communication. Watch their behavior closely to give you clues into some of their inner process. Provide opportunities for them to find comfort, such as from home videos or photo albums, doing things that the loved one enjoyed doing and telling your child it is a way for you to remember the happy even though you are also feeling sad.
DO give your child some slack. For some kids on the spectrum it may seem like they only experience one feeling at a time. This is not exactly true, they may be feeling many at one time, but one may feel much stronger at times and cause unpredictable behavior. They may even feel so overwhelmed that they try to turn their feelings "off". This is a coping mechanism, but it is critical that parents recognize that it is a temporary dam and that the floodgates, when they burst, can be as surprising and scary to your child as they are to you. So, tread softly, and try to be even more patient than usual.
DO acknowledge that anger is a real and legitimate emotion to experience when a loved one dies. Perhaps especially for an individual on the autism spectrum. It's ok for them to feel angry at this person for leaving them, for not giving them any warning, without saying goodbye. It's ok for them to feel angry at other caregivers or family members for not being able to stop it. Remember, at times their thinking is concrete and either/or. This means they cannot necessarily understand the limitations imposed on those caring for a sick or aging loved one. Allow, and even encourage them to feel this huge emotion and let them know that others feels the same. Help him find an outlet for his anger. Perhaps by drawing how he feels, writing a letter to their loved one telling them how they feel or what they wanted to be able to say, or throwing beanbags into a hamper or rocks into a lake or punching pillows. Anger can be scary for the child and parents, but it can give way to tears, and crying is restorative, it acts as a pressure relief valve and helps drain some of those huge emotions so that healthier ones can begin to take their place.
DO reassure them that they are safe and alive and that you are too. Use whatever helps them to feel safe, no matter if it means answering the same questions hundreds of times, familiar scripts that help them work through the process, or comfort objects that remind them of the loved one.
DO explain to older autistic kids, that some things that might make them feel better, like scripting facts related to the person's dying, might make others who are sad more sad because it is such a direct reminder of their loss. Many autistic individuals, including kids really do care about others feelings, often though they may feel confused as to how to proceed. Autistic individuals may not be able to stop themselves from certain behaviors and that is ok, they need their coping mechanisms, but some will be able to refrain. If they are refraining from these kind of scripts, it is essential that parents realize what a sacrifice that is, and they should praise and encourage the child! Practicing with your child a substitute script that still feels good to them but that they can use to engage with other grieving loved ones may be possible. Helping kids practice phrases such as, "I miss Grandma. I liked playing cards with her. What was your favorite thing to do with her?" might gradually help them see that others miss the loved one too, and that they can make others smile with a good memory. This may not be a possibility for some kids on the spectrum, and that is ok, they need to be able to cope. As parents we can help be the social salve. Support and console your child first, then remind others that this was a huge emotional blow for everyone and that she is trying to process this in the only way she knows how right now, then offer your love and support to your relative or friend as well. You don't need to apologize unless your child has said or done something truly innapropriate.
Whew! I know some of those were long, but they are soooooo important!
I am sure we will be having more conversations about Grandpa with Kit as time goes on. The subject is too big and abstract for her to have a tight grasp on right now. But that's ok. She can take all the time she needs.
In the meantime, while I hope none of you find yourself in the position of having to use this information, if you do, I sincerely hope it helps.