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Dr. Gupta
Dr. Gupta, Pediatrician
Category: Pediatrics
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Experience:  MD, practicing Pediatrician with 19 years of experience. Member American Academy of Pediatrics.
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My youngest child is 5 years old and he is diagnosed with autism

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My youngest child is 5 years old and he is diagnosed with autism and a new fear he has developed about death and how I should handle it.

He had a dream about 3 months ago where he says he died, and it scared him quite a bit, for weeks after that he would start crying thinking about death and it would take hours of distraction and trying to change the subject, etc to calm him down.

Then my grandpa died, he did not attend the funeral but he knew about it which brought the fear out again even more. He is asking questions about when you die and why, I try to answer with respect to his age and understanding by saying when we get very old this is natural but he doesn't need to worry, and he will say he doesn't want to die, he doesn't want to be gone forever etc. He is also aware that my brother died (from a brain tumor at a young age (32) so when I say people grow old and not to worry he will say your brother died he wasn't old so I say he was sick then it starts again with him saying what if he is sick.

I don't know where this all came from but he is becoming so focused on this, and the anxiety seems pretty high for his age and I just want to see how to handle this because talking it out with him isn't working. 3 times now I have noticed his eyes were full of tears and he wouldn't tell me why after asking a few times he spelled the word die, so I asked what he means and he starts saying please don't be upset and I go what and he breaks down crying about dying again. The fact he is hiding it and stressing this much I don't want him to feel he cant talk to me ...just feels like I should do something, but I have no idea what. Given the diagnosis of ASD he is becoming a bit obsessive with it that is why I am asking before it gets even more severe.

The fear is worse when he has left our house, if he stays with my parents for a night, or is up at the cottage for days at a time he is always wanting to come home. Even if the entire family is together the fear seems to come out as soon as he gets back to our home (not while he is away) and he will start with I don't want to leave forever and go to heaven, etc.
Any suggestions would be great.
Thank you.

PediatricMD :

Hello & welcome to Just Answer!

If you have any questions after reading my answer, be sure to let me know.

PediatricMD :

Due to challenges posed by information processing in Autism, death & bereavement can pose special challenges in these children

PediatricMD :

I would like to give a few tips and then direct you to a couple of excellent web resources that should help

PediatricMD :

When dealing with death and bereavement in an autistic child, the following thins help...

  • prepare your child as much as possible

  • keep routine changes to a minimum

  • use clear, simple language

  • use visual supports where appropriate

  • show understanding for unfamiliar displays of grief, such as challenging or obsessive behaviour or an increased reliance on routines. Any reactions may be delayed as compared to other people, when dealing with an autistic child

PediatricMD :

Since autistic children tend to respond better to clear & simple language and visual clues, it may be helpful to use some of the below mentioned strategies

PediatricMD :

"For example, if you describe death as "like going to sleep" you may make the individual terrified of going to sleep at night. Something simple such as "sometimes people's bodies become worn out" may be appropriate. If they want to know what this means, or how it will affect their lives, you could say that they "will not see Grandma again".

PediatricMD :

Sometimes using the example of a bird or an insect may help to understand the concept of death

PediatricMD :

Finally, for many kids of this age, fear of death can be an important issue, and here are are a few things that can assist,

PediatricMD :

  1. Be willing to discuss death with the child if he wishes it but use this as a time for reassurance, indicating that he really need not worry about it right now.

  2. Be honest when someone close to your family dies either through illness or accident. It’s the child’s lack of knowledge that will cause his fears.

  3. Be reassuring if the child thinks he was responsible for a death. Youngsters who are angry can think, “I hate him. I wish he were dead-” If by some awful chance, the person to whom the hate was directed dies, the child can feel responsible. Be sure that he knows he is not.

  4. Many experts feel that a child should be over five before he is exposed to a funeral home or funeral service experience and only then if he is willing. Parents may want to describe it as a way of saying “goodbye.”

Perhaps the kindest thing parents can do when dealing with a child’s fears is to admit their own childhood fears, especially if the parent had similar fears when he was a child. Then parent can indicate that he understands just how devastating such fears can be and that he stands ready to reassure and comfort whenever the child feels a need.

PediatricMD :

I would recommend using some of the above mentioned techniques, and getting back for any clarifications

PediatricMD :

References & further reading

PediatricMD :

Warm regards

PediatricMD :

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