HELP FOR PARENTS OF CHILDREN WITH ASPERGER'S & HIGH-FUNCTIONING AUTISM

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Abnormal Grieving in Children on the Autism Spectrum

“I have a 10-year old son Michael who has high functioning autism. His father passed away a couple months ago. Michael coped with this remarkably well initially. He didn’t seem terribly upset, and didn’t even cry at the memorial service. But about 3 weeks ago, we went together as a family to put some additional flowers on his father’s grave.  Later that day, I found him sobbing intensely in the closet in his bedroom. Currently, he is having a lot of behavior problems at school and is risking suspension. The school is considering transferring him to a special education class for students with various disabilities. Today, he refused to go to school. He hardly leaves the house. He prefers to stay in his room playing video games, and will not even eat meals with us. I told him that I would like for us to see a counselor for therapy, but he says he will not go! So my question is how do I get Michael to cope with the loss of his father?”


Children with High-Functioning Autism and Asperger’s have difficulty with empathy. This is largely due to the fact that the connection between their rational brain and their emotional brain is not fluid. They tend to get stuck on one side or the other. In other words, they are "Spock-like" (Star Trek reference) or excessively emotional. They have a huge disconnect between thinking and feeling, or cognitive empathy and emotional empathy.

The cause is poorly working circuits in the brain. Your son's brain has limited neurological mechanisms in place to understand or empathize. Perhaps this is why he could be stoic for a time. True empathy is the ability to be aware of one’s own feelings and thoughts -- at the same time. And it means having the wherewithal to speak about this awareness.

My best guess is that after his father's death, he was very much in his rational brain. Evidently the visit to the grave site was the trigger that linked his rational side to his emotional side. Your son is likely to be stuck in the emotional side of his brain longer than a "typical" child might be. Thus, he may take longer than expected to progress through the grief cycle.

The phases of grief are denial, anger, bargaining, depression, and acceptance. And it’s not uncommon for children on the autism spectrum to remain stuck in one of these phases for an extended period of time. After all, they do suffer from a “developmental disorder,” which means that they are emotionally and socially immature compared to their same-age peers. Mind-blindness and Alexithymia also play a role in the disruption of the grief cycle.

Some of these children display little emotion at the time of the parent’s death, almost to the point of appearing indifferent. They may fantasize that the parent is still alive, or believe that the parent will come back to life someday. However, they eventually become distraught (perhaps months later) once they have passed through the denial phase.

Others accept the fact that the parent is deceased – knowing full well what death means – but begin to display anger-management problems almost immediately. These children “act-out” behaviorally in a variety of ways, both at home and school. They have an acute reaction to the parent’s death, and may experience frequent and lengthy meltdowns for weeks – and even months – after the death.

Then there are those who turn their anger inward in the form of depression. They may refuse to attend school, refuse to eat meals with the rest of the family, and generally hibernate in their bedrooms. They are extremely hard to console, and tend to grieve longer than is typical.

As mentioned earlier, acceptance is the last phase of grief. Your son will get to that acceptance phase on his own time, which means the link from the emotional side to the rational side has had a connection. I believe that your son is stuck in the depression phase currently. And it wouldn't be surprising to see him bounce back and forth between depression and anger.

So, the emotional and behavioral issues that you are witnessing are, in my opinion, depression driven. Thus, it would be good to see the doctor and have your son assessed. He may need to be on an antidepressant for a short period of time.

Here are some additional things to consider:

After a death, many kids benefit from sharing their story. Telling their story is a healing experience. Therefore, one of the best ways you can help your son is to encourage him to talk about the experience and listen to his story. He could even write his story rather than speak it (e.g., he may want to tell what happened, where he was when he was told about the death, what it was like for him, etc.).

Especially now, your son needs continuity (i.e., normal activities at home and school), care (e.g., plenty of hugs and cuddles), and connection (i.e., to still feel connected to his father and you).

Talk to your son's teacher and other school staff about what has happened so that they are able to provide extra support.

Grief is a very lonely experience for all kids, but especially for those with an autism spectrum disorder. It’s important that your son continues to feel looked after and cared for. Ask other family members and friends to help you with this -- especially when your own grief is overwhelming!

When a parent dies, the entire family feels fractured and incomplete. It’s quite natural for your son to withdraw for a while. Give him time and space to grieve rather than insisting that he eat dinner with you.

Know that your son needs to have his fears and anxieties addressed. He needs to have respect for his own way of coping, reassurance that he is not to blame, and opportunities to remember his father. He also needs inclusion in rituals and anniversaries, adequate information about the death, and acknowledgement and acceptance of his feelings.

In addition, try some of the following strategies:
  • Talk about his dad (mention his name frequently).
  • Create an album of photographs and stories.
  • Create special rituals or remembrance activities.
  • Keep a journal of memories.
  • Link objects and special things (e.g., it's important that your son have some of the special objects that belonged to his father, such as items of clothing, jewelry, etc.).
  • Make a memory box and use this to store precious things that offer memories of his father.
  • Put together questions that build a portrait of his father (e.g., what was his favorite food, what was his favorite place, what was his favorite TV program, etc.). These questions can be asked and answered together as a family whenever the time seems right (i.e., when your son is actually in the mood to talk about his father).

Lastly, kids who are experiencing emotional problems due to the loss of a parent can really benefit from grief counseling. Below are some signs that your son may need professional help. Many of these signs are normal following the death of a mother or father, but indicate a problem if they are prolonged:
  • aggressive behavior and anger
  • eating disturbance (e.g., eating excessively or having no appetite)
  • marked social withdrawal (e.g., not wanting to socialize with family or friends)
  • persistent blame or guilt
  • persistent difficulty talking about the deceased parent
  • school difficulties (e.g., academic reversal, school refusal, inability to concentrate, behavioral problems)
  • self-destructive behavior (e.g., suicidal thoughts, talking about wanting to hurt themselves)
  • sleep difficulties
  • unexplained physical symptoms and discomfort (e.g., stomach aches, headaches)

Grief counseling provides kids the opportunity to talk about very difficult things in a safe and nonjudgmental environment. If all else fails, the seeking the assistance of a qualified grief counselor is highly recommended (preferably one who specializes in working with children on the autism spectrum).

Teaching Social Skills and Emotion Management
 
COMMENTS:

•    Anonymous said…  Do not be afraid of special education classes...Most are so smart and the teacher is well equipped to assist with these things! Best thing I ever did for my son.
•    Anonymous said… Get him a kitten or puppy....he needs to love...it worked well with my mom passing and my noeces were in serious grief (ages 5 and 6) at that time. It was quite the healer ....
•    Anonymous said… Here in NY , My aspie hasnt found an ounce of understanding in any of the 3 schools he has been in ...the damage they have done is unreal ...all i can say is ... be your childs advocate or get one and be LOUD and take no crud ! If i had it to do all over again ... things would be so different ...the school system would be asking ME how high should we jump !
•    Anonymous said… I have been through this with my two surviving children when their brother passed away suddenly in a car accident. My first advice is to protect your child at school. Make sure your gets a functional behavioral assessment to ensure he is protected. Put the request in writing and ask for a response within three days. Send the request by email or preferably certified mail. Moving classrooms sounds like school/administrativly focused rather than child focused. Everything I know about autism and grief in teens/children says maintain consistency. Is this school focused on your child's needs or on what is best for them from an administrative standpoint? My daughter became increasingly withdrawn to the point of refusing to go to school. Unfortunately for us, it became a very negative situation where the teachers and administrators just wanted a quick fix, such as medication - which she was already on. It was obvious they just "didn't want to deal with it". We wound up homeschooling this year and she is sooooo much happier. I feel in hindsight she needed that time to "heal" and to be in a protective, loving environment where stress is minimized. I know it might seem impossible if you are working and/or a single parent, but look into online programs, local home-school co-ops, etc. Seek out therapy together and tell him it's for "the family," that way he doesn't feel singled out. Have him earn video game time or maybe a new game or add-on for going. Big  🤗
•    Anonymous said… I'd watch his behaviour carefully. The massive cry may have helped, but if you're still seeing signs of stress in his play, it might be worth seeing a psych.
•    Anonymous said… My asd daughter was 5 when he first dad died she never spoke about him since. Went to grave few times and now older she tells me if she wants to go. I gave her photos and some of his things to keep. She is 16 now. I think she has just accepted it I remarried x hope you find the answer for your son sorry for ur loss
•    Anonymous said… There are grief counselors who can come to the home. Not sure if trained for special needs, but I will look for the link. I know also that play or art therapy with counseling if you can him there eventually can help.
•    Anonymous said… This explains so much! When our daughter passed (his little sister) my husband and I had to sit our son down and tell him. His exact words were "Meh, i wanted a brother anyway." Now this was prior to him being diagnosed and I was taken aback but did not for a second think he meant it ill intentioned just because I know my son. Now that he is diagnosed, my whole life is now filling in the missing pieces of the last 10 years. It's all coming together.
•    Anonymous said… When my mother died of cancer this past August, my son didn't cry or talk about it at all. Several months later, my daughter pointed out that he has been "meaner since Granny died". I started to talking to him about it and he just fell apart, crying hysterically! He has not cried or spoken about it since. Should I bring this up with him and make him talk about it?

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