Sep
18
Along life’s journey, we all face challenges that are seemingly sent to test us and our ability to cope and grow. We may be sent reeling, brought to our knees, rendered obsolete for a time, minus life’s compass after the death of a loved one, regardless of faith. Hopefully, we emerge stronger given time. One of the hardest challenges in life is that of death, the coming to terms, the letting go, and eventual re-emergence of our ‘self’. Sometimes, we may have time to prepare ourselves for its coming, other times it may creep up on us, all too abruptly, leaving us fighting for breath, struggling to cope from one day to the next.
For some, there may be a sense of relief, especially if this loss involved significant suffering over time. Our reactions and our grief, may differ significantly in expression, from one person to the next and from one day to the next. The rollercoaster ride is very real and very much a part of the grieving process. Some may feel broken, withdrawing from life for some time as a part of ‘coming to terms’ with their loss, while others have a strong desire to talk and share.
Others may outwardly present as strong and ever resilient, whether they are in actuality or not. I’m aware of teenagers on the spectrum who have experienced loss of a parent and have veered dangerously off course onto a self destructive path, in desperate need of an anchor. Just as surely as each human being on the planet is unique and complex, so equally unique and complex may their reactions be.
It should be noted that the loss of a person, not necessarily through death, but as a significant presence in our lives may have the same impact as that of death. This is never more true than for that of an autistic person who tends to be referenced to others. An autistic person may feel emotion far more intensely than one who is not on the autism spectrum. (See “Asperger’s Theory Does About Face – A groundbreaking study suggests people with autism-spectrum disorders such as Asperger’s do not lack empathy – rather, they feel others’ emotions too intensely to cope.http://www.thestar.com/article/633688)
A strong sense of bereavement may be experienced, even for young children on the spectrum, at changes in for example, school settings(the move from one known and learned environment to another), the loss of a friend or perceived friend(due to moving or otherwise).
It is not unusual for a child or adult on the spectrum to laugh or giggle in circumstances where one would anticipate an expression of embarrassment, discomfort, pain or sadness. Unusual reactions toward a death in the family, such as laughter or mania as studied by Berthier(1995) are by no means uncommon for those on the spectrum. This is likely due to the inability to express appropriate and subtle emotions. This is by no means evidence of mental illness or callousness. Understanding and tolerance of idiosyncratic ways of expressing grief is needed. ~Julie
The following compilation of articles and resources will be updated as time allows.
ARTICLES
“Death, Bereavement and Autism Spectrum Disordersâ€:
“Grief Reactions Subside In Most Children & Teens Whose Parent Dies Suddenly, But May Persist Or Increase In Some Casesâ€:
“Losing a Parent Can Be Fatalâ€:
https://www.aspie-editorial.com/2011/04/01/loss-grieving-losing-a-parent-can-be-fatal/
“On Losing a Childâ€:
https://www.aspie-editorial.com/2011/01/22/loss-grieving-on-losing-a-child/
“Surviving the Suicide of Someone You Love/Dealing With Grief & Loss(Post Fort Hood)â€:
“Living While Dying – Learning To Live In The Face Of Cancerâ€:
“Can Mindfulness Alter The Power That Death Holds Over Us?â€:
https://www.aspie-editorial.com/2011/03/01/can-mindfulness-alter-the-power-that-death-holds-over-us/
“Grief Versus Depressionâ€:
https://www.aspie-editorial.com/2011/01/22/grief-versus-depression/
“The Holiday Season: When SAD and Grief Occurâ€:
https://www.aspie-editorial.com/2011/01/22/the-holiday-season-when-sad-and-grief-occur/
“Loss on Holidays & Special Daysâ€:
https://www.aspie-editorial.com/2011/01/22/loss-grieving-loss-on-holidays-special-days-2/
“Grieving: 7 Tips To Get You Through The Holidaysâ€:
https://www.aspie-editorial.com/2011/01/09/grieving-7-tips-to-get-you-through-the-holidays/
“Improved ‘Prolonged Grief Disorder’ Criteria Would Help Bereavedâ€:
“Working Through Grief: It’s Different For Everyoneâ€:
http://www.medicalnewstoday.com/articles/174916.php
“Managing Anxiety and Grief Made A Little Easierâ€:
http://www.grief-healing-support.com/anxiety-and-grief.html
“Mind Hacks: The Evolution of Death and Dyingâ€:
http://www.mindhacks.com/blog/2010/01/the_evolution_of_dea.html
Books: Review of “The Other Side of Sadness†by George A. Bonanno
The findings of George A. Bonanno, a clinical psychologist who interviewed hundreds of grieving people, were different from those of Freud and Elisabeth Kübler-Ross.
http://www.nytimes.com/2009/12/29/health/29book.html?ref=science
Fact Sheet “Death in the Familyâ€
BOOKS
“When Dad Diedâ€:
http://www.rcpsych.ac.uk/publications/booksbeyondwords/bbw/1904671047.aspx
“When Mum Diedâ€:
http://www.rcpsych.ac.uk/publications/booksbeyondwords/bbw/1904671039.aspx
“When Somebody Diesâ€:
http://www.rcpsych.ac.uk/publications/booksbeyondwords/bbw/1901242900.aspx
“Bereavement, Loss and Learning Disabilities: A Guide for Professionals and Carersâ€
Robin Grey
http://www.jkp.com/catalogue/book/9781849050203
“Autism and Lossâ€
Rachel Forrester-Jones and Sarah Broadhurst
http://www.jkp.com/catalogue/book/9781843104339
RESOURCES
Cruse Bereavement Care
Able to talk about any form of bereavement (not autism or disability specific).
Helpline: 0870 167 1677
Email: helpline@crusebereavementcare.org.uk
www.crusebereavementcare.org.uk
RD4U
Website designed by young people for young people (not autism or disability specific). It is a part of Cruse Bereavement Cares Youth Involvement Project. Private messages can be sent to trained volunteers through the website, or you can speak to them direct through the free Helpline: 0808 808 1677 (Monday to Friday 9:30am to 5pm)
www.rd4u.org.uk
Resources for Grieving Families
GriefShare:
GriefNet:
Compassionate Friends/Salem, Or:
Compassionate Friends, Portland, Or:
Crisis, Grief & Healing for Men:
Lamenting Sons: Fathers & Grief:
http://lifegard.tripod.com/index-4.html
Grief Watch:
Silent Grief:
Alive Alone: Loss of Only Child:
Grandparent Grief:
http://missfoundation.org/family/grandparents.html
Books for Grieving Families:
http://astore.amazon.com/journalinthro-20?node=2&page=2
Resources for Siblings
The Dougy Center, Portland, Or:
Me, Too. & Company: supporting children and families in grief:
http://www.oregonhospice.org/metoo_and_company.htm
Adult Sibling Grief:
http://www.adultsiblinggrief.com/
Sibling Survivors of Suicide:
http://www.connect.legacy.com/inspire/sibling-survivors-of-suicide?&sn=flint
KIDSAID:
Books on Helping Children & Teens with Death & Grief:
http://www.carefordying.org/mainwebsite_html/books/bookHelp.html
Infant Loss
Mend:
http://www.mend.org/support/home.asp
Hannah’s Prayer:
http://www.hannahscupboard.com/hannahs-prayer.html
Brief Encounters, Oregon:
http://www.briefencounters.org/home/
M.I.S.S. Foundation:
http://www.missfoundation.org/
First Candle(S.I.D.S. Loss):
CLIMB(Center for Loss in Multiple Births):
Multiplicity(Loss of Twins or other Multiples):
http://www.synspectrum.com/multiplicity.html
After the Loss of Your Baby: A Book For Teen Mothers:
http://www.aplacetoremember.com/pdshop/shop/item.aspx?itemid=37
Someone Came Before You: A Book for Subsequent Siblings:
http://www.amazon.com/Someone-Came-Before-You-Schwiebert/dp/0972424156
Miscarriage Loss
A Place to Remember(incl. birth/death announcement cards):
http://www.aplacetoremember.com/
The Forgotten Grief:
http://forgottengrief.blogspot.com/
La Belle Dame memorial jewelry:
My Forever Child memorial jewelry:
Child Death: Specific Causes
First candle(S.I.D.S. Loss):
SUDC(Sudden Unexplained Death in Childhood):
SADS(Sudden Arrhythmia Death Syndrome):
Parents of Suicide:
http://www.parentsofsuicide.com/
Suicide.org:
POMC(Parents of Murdered Children):
Victim Assistance: National Center for Victims of Crime:
http://www.ncvc.org/ncvc/main.aspx?dbID=DB_VictimAssistance207
The Hope Foundation(homicide survivors):
http://www.opentohope.com/special-topics/traumatic-deaths/homicide/
Military Death Resources
TAPS(Tragedy Assistance Program):
Military OneSource:
http://www.militaryonesource.com/MOS.aspx
U.S. Department of Veterans Affairs (VA) bereavement counseling:
http://www.vetcenter.va.gov/Bereavement_Counseling.asp
American Gold Star Mothers Inc:
Gold Star Wives of America Inc:
Society of Military Widows:
http://www.militarywidows.org/
United Warrior Survivor Foundation:
Travis John by Kate Power, free MP3 download:
http://qualityfolk.com/music/travisjohn.html
Operation Remembrance: free Memory Boxes:
http://www.operationremembrance.org/
GriefNet war and combat losses email support groups:
http://griefnet.org/support/sg2.html#war_combat
Kids-to-Kids: GriefNet’s Child and teen survival support:
http://griefnet.org/support/sg2.html
Survival Resources For Those In Crisis
Alcoholics Anonymous Group Finder:
http://www.aa.org/lang/en/subpage.cfm?page=28
Sober24:
Narcotics Anonymous Group Finder:
http://portaltools.na.org/portaltools/MeetingLoc/
National Suicide Hotlines USA:
Befrienders Worldwide Support Group: