you cannot save people only love them

Over the course of the past 12 months, the irredeemability of death and the devastation that follows has been part and parcel of our work. We have lost friends and colleagues, we have also supported service users through the loss of their loved ones.

Friends and family of the grieving often ask us “How do you support someone with Autism / Aspergers Syndrome / PDD / Learning Differences through grief?”

Before we continue, it’s important to note that this advice extends to all populations; everyone needs to hear that this storm (specifically, the grief) will pass. While memories and emotions about the deceased will live on with you, the grief will eventually subside.

There is no set time, however, and it’s important that the opportunity is taken to discuss grief as an emotion. In the same way that some memories will make you laugh years after the fact, some memories will result in feelings of grief. That’s human and that’s ok.

In our experience we have found that it is important to label what the grieving individual is struggling with. The struggle is with the fact that death is unalterable;  while every ounce of you may be sifting through your last meeting or communication with the deceased to determine whether you could have prevented this loss, it will not change the reality that they are no longer here. Coming to terms with that reality is part of the struggle.

Models of grief are important in understanding grief and helping people know that there is an endpoint. As an individual experiencing grief, it is important to remember that you are important too. There is no set way to grieve, the most important thing to do is support the individual who is grieving as best you can. If you are reading this article for yourself then it might be worth considering finding a support group, helpline (You can write, call or arrange a face-to-face appointment with organisations like The Samaritans), or contact a service like us.

Stages of grief aren’t as clear cut as infographics lead us to believe. As opposed to moving seamlessly through denial, anger, bargaining, depression and acceptance; Some people start with acceptance and then move on to bargaining. Some people don’t bargain at all and experience depression. Some people experience grief in a way that doesn’t relate to any of those stages.

Depending on the individual’s relationship with the person (or animal) that has passed away, the grief can vary from mild to all-consuming. Expression of grief also varies between individuals. In one case, an adult with AS was isolated by his family because they felt that he didn’t express the appropriate amount of grief. There is no “appropriate” amount of grief. Some people cry, some retreat into silence and some smile.

Sometimes the reality of loss takes longer for the individual to come to terms with, change is hard for everyone. While death is accepted as a fact of life, the reality of loss is very different. We are all born and we will all die. But the notion of loss doesn’t come into that discussion and it is important to open a dialogue about loss, perspectives about loss (e.g. “I am so grateful to have known them and I miss them very much”, “I always think about them”, “We were not close, I am sad that they have passed away but I didn’t know them very well so my experience of loss isn’t as much as someone who was close to them”) and ways to cope with loss.

An aspect of Autistic Spectrum Condition, for example, is difficulties with emotion regulation, for some this struggle is greater than for others. It is important not to undermine or berate others because they do not communicate emotion in the same way that you do, support them in coming to terms with their emotions.

The emptiness and the emotional clawing that happens after losing a loved one or a friend is overwhelming. Death is irredeemable, nothing can or will change that. Only now, with technology allowing us to communicate with one another at an almost immediate rate without being in proximity of eachother, the hollow silence that follows death is another reminder of that irredeemability.

The irredeemability of death is something that everyone struggles with. It is raw, overpowering and devastating. It has the capability to catch you off guard and if you (or the person you are supporting) has difficulty labelling their emotions then supportive aids such as sensory play and finding/giving them an outlet to express their feelings (drawings, writing stories or poems, listening to or playing music) can help.

But, our final and most important piece of advice in terms of assisting a loved one through grief is to support them as best you can. Communicate on their terms and do everything that you can to ensure that they know that you are there to support them. Silence will not suffice.

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