Telling autistic kids about cancer

Hi  and welcome to the Online Community, although I am so sorry to see the circumstance that brought you here and so sorry to hear the issues your family are facing.

I am Mike Thehighlander and I help out on the Community and I will do my best to direct you to the best place for you to find the support and help you need.

I have no experience in talking about cancer to Autistic Children but talking with people who are on the same journey can help.

You may find these forums helpful where you can connect with others supporting family and friends through the cancer journey Carers Forum, Friends and Family Forum and Supporting someone with incurable cancer.

Just join the group and hit the 'Start a Discussion' tab and introduce yourself to the group and remember to go to the right on the group home page and select how you want to receive email notifications when someone answers your posts.

You could have a look at this Macmillan Info sheet Talking to Children about Cancer and check to see if you have a Maggie’s Centre near you as these folks are great.

You may also find our various Macmillan Support Line Services on 0808 808 00 00 to be helpful as you can talk to a friendly person that can help in lots of ways.

When you have the time it would be helpful if you could put some information about yourself and the journey that brought you to the Community into your profile as it really does help the Community members to help you and get to know you. 

Click on your username and that will take you to your homepage. Look for ‘Edit my Profile’ click on it and start to tell us as much or as little about yourself as you want then click on save before closing the page. 

All the best. 

Hi 

I am going to tag my friend Gragon whose son is autistic and I hope will be able to share his invaluable experience. He should get an alert about this thread and hopefully get back to you  soon 

xx

Hi and my welcome to the online community also and I hope we can help you find the information you need in talking to your children.

Macmillan publish a booklet on Supporting children when an adult has cancer which maybe of interest to you.

If you click on the green text above it will take you to the ordering page.

Ian

Hi ,

I'm so sorry that you have had to join us in the community.

Just to say from the start that my son is not autistic but I have worked a lot with adults who are on the autistic spectrum. My wife also works supporting young people in college a number of who are autistic so this might be where the confusion came.

I was advised that I had incurable cancer just over four years ago when my son was 9 and know how difficult it is to tell a child of that age without the additional complication of autism.

I'm reluctant to be too prescriptive as you will obviously know your children better than anyone else and know what they are best able to understand and how they will react. Having said that I strongly believe that you must be honest with children within the limits of their understanding. When I started to explain to my son my own understanding was nowhere near as good as it is now and the treatments available for my particular cancer (kidney cancer, renal clear cell) have developed rapidly over the past few years. When I told my son he interrupted me part way through and told me that he did not want to know if I was going to die. As it happens it appears that he was wiser that I as I was convinced I would die quite quickly, apparently this was not the case. I know that lots of children with autism have very good memories and are likely to take what you say quite literally so I think it will be important to you all to be as clear as possible.

You might also want to discuss this with your dad, how he would like it to be addressed and how he would like the children to engage with him about it. It would be upsetting for all of them if the children inadvertently asked your dad questions which caused him to become emotional or if he ended up giving them a different response to the one you had given.

Just like autism, incurable covers quite a spectrum. For some incurable can move quite quickly to terminal but for others it is unlikely that they will die from their particular cancer but are likely to die naturally from other causes first. I know that a lot of people with autism do not deal well with uncertainty so I would give as much information as you can but also explain that the situation might change. This could be for the better if your dad responds to treatment or if new treatment becomes available, or worse if the disease builds up a tolerance to the medication. This will also enable you to explain to them if the situation changes.

You could try contacting the National Autistic Society to see if they have any useful tips or advice.

I hope that this has been useful for you.

Wishing all the best to you and your family.

Gragon xx

Apologies for misunderstanding, Gragon and thanks for replying 

xx