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PRACTICAL INTERVENTIONS:

"Where can we find reliable information about effective interventions?"
The INTERVENTIONS column links provide a basic map of effective Autism interventions and the various ways they may influence our life outcomes; intermediate information about universal best Autism practices; advancing theories about behavioral, eclectic, and developmental intervention approaches; a discussion about how family and service providers may choose their own paths and how to find an experience guide. In addition you will find useful literature sources on developmental system science approaches and adaptive adult provider development. While Threshold is a developmental provider ourselves, we have worked with many behavioral and electic model provider community members and their bases of Autism scholarship and practice knowledge to develop our information in an authentically inclusive model of community consensus building. However, the information we provide on any approaches is not intended to be comprehensive and complete but rather, to offer some useful directions to find the particular intervention training resources which families may choose here and out in the world. This can help new family and novice service providers get reoriented our own place in the practice of Autism providership that offer specific maps of where to find best practice supports and demand disciplines.

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


STOP! I am totally upset/exhausted at this point. What can I do as a parent NOW?

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

Get ready for the journey ahead of you by first starting from where you are now and with yourself, and then by benefiting from the most important tips that experienced parents offer our new parents.These are the bits of critical advice that we wished we had before we began, and that we want to pass on to new parents as they begin on this journey. We need to share them because they have proven to help new parents avoid the deep pitfalls and climb the high mountains of the early survivor struggles we must all face when Autism comes into our lives:

1) Take VERY good care of yourself as an adult. Eat well and first, get real sleep every night, and take rest breaks during the day. Because, if we don’t we WILL soon wreck our health--then where will our children and families be? You may feel your child MUST 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.

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. 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 ASAP. If your partner and/or family members are not available to support you in your struggles, then find someone to talk to and share your hopes and fears 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 from faith-based or recovery work groups, or it can be a counselor or a friend--as long as it is a person who listens without expecting you to fix your child or for you to go through a speedy linear grieving process. No one died here. We LIVE with Autism, so we adjust to working and coping in a SPACE of deep sorrow, and yes, true joy in our lives.

4) Take good care of your external resources too. If you have money it will be very hard not to spend it all at once, in the hope of a cure. If you do not have money it will be tempting to go into debt or to feel guilty about what you cannot do. Watch out for these false impulses. It is TIME with parents and teachers trained in an intervention method of your choice that IS always the most effective support for children and adults with Autism. So get the training you need and want ASAP--it is always more available and affordable. Take good care of your money now, because with (or without) Autism, our children and our partners may have life long needs for our financial support.

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.

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.

7) Try one thing at a time If your child is young, and you have the resources to do so, you may want to try out every single biomedical and intensive therapeutic treatment intervention. OK. BUT if you do everything all at once you can NEVER tell what is working or not. This can become a huge waste of your time and money. Pick one thing. Try it for 3-4 weeks. (biomedical) to 3-6 months. (therapeutic/educational) then move onto to or add the next thing. Remember always objectively document your child's original/new developmental levels, before starting a new intervention.

8) Start by getting good professional baseline evaluations before you start any interventions. If you are going to be trying out many interventions, a clear baseline 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.

9) Do NOT tell anyone outside any treatment trials what is being tried. That means tell no one your child lives and works with across settings. This is because the most important kind of feedback and the most valid kinds of data will always come from lay people and professionals who know your child well, but that who do not know what is being tried and when it is being tried. So do NOT tell anyone not involved in another intervention--so we may provide you with real objective data. However, ALWAYS keep your child’s doctor informed of ALL biomedical or nutritional trials that you do BEFORE you do them. That is critical in a world with so many forms of possible interventions and a wide spectrum of outcomes probable for any one intervention.

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.

Don't worry that you have to do this alone, you do not. Just find your local Autism Community, and Everything is going to be O.K.


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

Note: All these links/articles were originally published with the author's permission in the The Net Journal of the Autism Society of Oregon. Summe.r 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.