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CONTEXT-BASED AUTISM INFORMATION: Life Span Survivorship

A big part of Threshold's Autism Community Service work is to listen, in person, by phone, by mail and by email. We listen to people with Autism and to our family members and to our service providers and to our advocates and allies. In listening daily over a dozen years we have learned that the lives and work of those of us who live, work and cope with the mutual impacts of Autism have a very important history to share. It is an often silent and silenced history that is tragic, but that holds our greatest hopes for a brighter future for the life span of each generation.

Through listening, and answering famly and service providers questions and inquiring about our realities, we have come to understand that only a person with Autism, and our family members can fully appreciate the painful realities and the life and death risks we face in daily life, and over our life times. Because of the natural and environmental communication barriers that people with Autism face, only a few people with Autism have found their own voices and a venue to have people listen to us. Often time it is family members who must be our voices as best we are able to understand us. Much is lost and much is gained in our attempts to translate information between us.

Family members often share how it is a wonder to parents that our children with Autism choose to get out of bed and face the day, and a marvel that we are able to rise with them each day. Each night we doubt we can do it--then we do. When parents think back to our lives before Autism, we never imagined having such a brave child or such a difficult life. We never imagined either of us could survive such loss and manage such a heavy load. The terrible truth is that we are both at risk of being lost at sea each day. Children with Autism are at terrible risk of harm in so many ways and our parents are at risk of provider exhaustion right from the start. Not all of us will survive. Those of us who manange to thrive in the face of all these challenges may be more visible and so may mislead the public about our groups realities. Those of us who manage to survive are less visible and yet more representative of our groups endurance and risks. Those of us who are victims, and there are real victims in the world of Autism--we cannot see them because they do not survive. We are lost and not often seen.

Quite frankly it is a rare service provider to can tolerate the level of uncomfortableness required to stand in that reality with us. Most folks who go into service providership choose the profession with the goal of making a difference as an individual and to be able to care about and help people as part of our workday.

THRESHOLD'S OP TEN FAMILY LONGTERM SUVIVORSHIP TIPS WE CAN ALL USE:

Very few new family or novice service providers follow our top ten tips the first year or two after our children are diagnosed and we begin our work together. We believe that the track ahead calls for a sprint and we burn all available resources to find a cure or at the very least the best services and intervention resources possible. Most of all, stress begins to overwhelm us at a biological, cognitive, emotional level right at the time we begin to realize that no matter how well our children do, this is going to be a marathon. Our health and youth is often lost before we know it. Then we may find ourselves overboard and in trouble. Below are the important tips that experienced parents offer our exhausted parents.These are the details of the critical advice that we wished we had before we began, and that we want to pass on to our tired peers, as they continue on this journey. We need to share them because they have proven to help all parents avoid the life span deep pitfalls and climb the high mountains of the ongoing survivor struggles we must all face when Autism has become part of our lives:

1) Take VERY good care of yourself as an adult provider who needs to live and work productively as long as possible in order to provide for our young or adult children's security in their life and work. Eat well, and eat first before your children to be sure you do, get eight hours of real sleep every night, and take three rest breaks during the day for twenty minutes at 10AM 2PM and 6PM. Eat healthy foods that combat rather than add to stress and finish eating earlier in the evening. Drink LOTS of water throughout the day, even if you do not think you are thirsty--because you are under stress. Because, if we don’t do these basic biological survival and longevity habits we WILL soon wreck our health--then where will our children and families be? You may feel your child MUST still come first--but try to realize your child NEEDS YOU to come first instead. You may resist this idea until you drop the first time. But please do NOT to go there--because our love for your children can take us to the brink of ruining our health, finances and family if we are not careful. To avoid driving yourself off this cliff, remember that people with Autism need adults to be alert, aware, and able to be there for us. Remember this advice is not coming from professionals this time--it is coming from other parents.

2) Stick together as a couple/family. Yet, know that one partner/member may seem to become totally consumed by this loss at first, while the other may seem focused on only doing just their job and insisting that things are really normal and that the child will be fine. But as time goes on your roles may reverse and that can create couples conflicts. The person who has grieved first is resentful at the one who was not "there for me when I was hurting" and the other partner may feel out of sync and misunderstood and even feel the other parent has lost their motivation to help their child. Just as before these are not necessarily true at all..These opposite responses are not necessarily about one person over-reacting or the other person being in denial, nor is this difference in each other’s experience about mutual abandonment in a time of crisis--not at all. It is about how two adults may just unconsciously and more functionally respond to both the huge inner emotional and the practical external impacts of Autism. So family members may HAVE TO take turns with all the work of sorrow AND the work of survival over several years not just a few months. This can feel very lonely for us both. So let yourself and each other share your own realities, listen to become aware of, and honor each other’s tough roles in managing this family crisis. Let go of making everyone go through this process in some predictable linear way. Listening without controlling the other person's survivorship process is key to getting to all our goal lines together. Then we benefit from each other's journeys and sucesses and help avoid failures. The parent who does the emotional recovery or practical survival work first can help the other later as guide. When we let this happen we can truly appredicate the other partner and benefit from their sacrifice.

3) Find someone to talk to about all this as you travel this life road. If your partner and/or family members are not available to support you in your struggles, then find someone WHO IS KNOWLEDGEABLE ABOUT AUTISM to talk to and share your hopes and fears and progress and problems with on a VERY regular basis. This will help you build and maintain the base of internal resources you will need for this life challenge. It can be someone who serves your child or another service provider or peer supporter. Experienced parents who are also providers are an ideal option--but any experienced family or service provider who is open to holding a family-centered perspective will do very well.

4) Take good care of your external resources too. If you have any money left it will be very hard to hang onto it over time, but you must try. Your retirement needs and your childrens educational and possible long term support needs may arrive at the same time. If you do not have money it will be tempting to ignore this reality. Watch out for these false impulses. It always pays to dig in and learn now about the kinds of public support services each of your family members may be eligible for now and in the future. Knowing will reduce that nagging worry in the back of your mind and help you prepare for adult life transitions. Don't hide, just look at the reality one piece at a time as you live one day at a time. Then the future will not get here so fast with you unprepared. Your best investment will be to choose a best practice model and learn it as you go. Then you can take good care of your money, by slowing down on the outgo on every possible intervention you hear about and start saving a little again.

5) Do not waste time and money trying to figure out this complex disorder by yourself. Many have gone before you, families who can help you get the big picture much faster, because we have already toured the world of Autism. So GO to local Autism support groups and quickly learn all that we cannot fit here. Yes, people may have widely differing opinions, therefore see this as a place to reflectively feel, empathically listen, and critically think about what you may hear. However, if you have done the research to build your own individual intervention program for your child, you will need to plan for the time and money and resources that it will take you to have each new provider team get on board. You may want to look at existing best practice models and see if one is close to what you have created. That can make it easier to get folks onboard with your program.

6) Take on this challenge just one day at a time. While we all know that we cannot stop parents from an early sprint out of the blocks to save our own children, we all must still try to save you, your child and family from total burn-out. So we experienced parents ask that you just BEGIN to realize that this is going to be a marathon. As soon as you are willing, try to start to pace yourself. This road has exhausted and ruined our families who try to do WAY too much too fast. Please do not think that slowing down on your intervention efforts is about giving up or giving in, for it is not about this at all. It is just the next natural part of the race of being a parent to a child with Autism. You NEED to pace the years ahead to make it and think about this in terms of the tortoise who kept up a slower but steady pace and won the race. Research actually slows that people with Autism benefit from a longer and slower and more steady pace of intervention services and programs over their lifetimes. Celebrate that you have made it this far and hold onto great hope about the years ahead. With best practice programs and positive developmental approaches they can be wonderful no matter where you find yourself and your child on the Autism Spectrum. However, remember for your future pacing that the road can seem to turn uphill if you have had a verbal and more intellectually intact child as they strive to be included in the world of teens and adults without Autism. That is O.K. Just go slow and steady.

7) Try one thing at a time If your child is young OR OLDER, and you still have the resources to be trying new things while still maintaining the interventions that have worked. This is the long term secret, to find out what works and keep it going without dropping working strategies to try out the latest fad. This can become a huge waste of your time and money. So stay focused on maintaining what works and then fit in new things as is possible with your remaining available time, energy and money. Just do not burn out. Remember always objectively document your child's original/new developmental levels, before starting a new intervention.

8) Keep going by getting good professional baseline evaluations at each stage of your child's life before you start any new interventions. This way you can see if the interventions you have been doing are helping. If you are going to be trying out new interventions, a clear baseline from an objective provider will help you record real progress and evaluate what works. You can also write a parent before/after journal on how your child is doing--first just jot down your view of your child’s current weaknesses and strengths. Then while you are trialing something, journal on the changes you may see, hear, and feel have happened. When journaling separate your objective observations from your subjective feelings. Most of all be sure to understand that your child's standardized scores may go down over time, despite them making great and real progress. This is because standardized tests will always compare your child to typical children of the same chronological age. The impacts of Autism may show themselves early on or in middle stages of childhood or even later without your child's condition changing. So do not panic if this happens, take your child's old and new evaluations in and talk to the tester to understand this issue.

9) Create a support network that can last over time and troubles. Along this path of living, working and coping with Autism you may have some existing family and friends moving in closer and help more and others may seem to distance themselves and not be as available to help and support you as they once were. Do not take this as personally as you may feel you should. The reality is that NONE OF US is prepared to deal with the realities of Autism or how to help those of us who must. You will have new extended family members show up from the most unexpected places and new friends from within the Autism community and the community at large who can understand and help you in the place of those who may be gone. In addition, sometimes when absent family and lost friends see you are surviving they may want to participate now that you can teach them how to help you and your child. No matter what be sure to do the work to build/rebuild your ongoing support network.

10) Hold onto real hope, which is actually a built on a healthy balance of trust and mistrust in yourself and the judgement of people who care about provide service for your child. So YES, judge what is going on for you and your child and everyone who helps you. Stay aware of your fears, which are realistic in the case of Autism, and act on them. These feelings are powerful motivators for the adult provider-skills growth that supports everyone’s survival of this new reality. If you have held onto hope over the first few years and gotten the help you deserve you will find yourself feeling the will to go on with a clear purpose of being a parent that you thought you might have lost. Best of all you have gained new compentencies that can help you feel that you and your whole family is back on track. The road may still get rocky at times. Everything is going to be O.K. just keep going.

Don't worry that you have to do this alone, you do not. Just find your local Autism Community Mentoring Groups with parents of children the same age and stage of life as you and your child. That can make the trip a more meaningful life journey.


You may send in additional questions on this topic for us to answer.

Note: All these links/articles were originally published, in their NEW PARENT TIPS form, with the author's permission in the The Net Journal of the Autism Society of Oregon. Summer and Fall 2003, and Winter 2004, Issues. Sharone Lee, editor and author. They have been returned to their home at Threshold, but they have been kept in our public access pages for all our parent's use, and on this page edited to include our experienced parents survivorship needs..