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CONTEXTUAL AUTISM INFORMATION: Choosing Your Path as an Family and/or Service Provider
When will someone show me where to go, when to be there, and how to do what I need to do to help my child/my students with Autism?
If you are new to Autism first thing you need to do is to let yourselve recover your center a bit first. Next, you will need to become aware of what you do and do not know about Autism and what we all do and do not know about Autism too. Increasing that awareness is what this website is designed to help new parents and novice service providers. Then you can go out in search of your region's Autism community and its existing public and private service providerships. You may find folks who will tell you what to do and what they tell you will feel right--then you are all set for now. If you find skilled folks and you cannot understand, accept or agree with what they are saying you may need more time or another provider. There is no one right place or person that we can send you to--you will have to find them within your own Autism community.
In the United States and other nations with publically funded national educational and human service systems there will be local, regional, and federal agencies involved in funding these services. You can begin at the nearest larger city and state agencies that provide for your community's education, human services, and mental health and developmental disability needs. Th private organizations and public institutions you find may not provide the direct Autism intervention services you are seeking, but they can help you connect to those contacts who do provide them closest to you, because that is their job. The other information and source will be any Universities near you that have Psychology and Educational degree programs in which faculty and students are working in the field of Autism best practice research. Finally, you can talk to your own doctor and your nearest-to-home school ad, and a family counselor to give you some support. Not everyone will know alot about Autism. That is O.K. at first you need people who know how the medical, educational, social work and mental health and developmental service systems work in your area. Then you will find folks who know about Autism. One of the main sources of Autism expertise will often be found somewhat buried in the educational system and behind the special education system in the form of what will probably be some kind of regional Autism specialist team. The tough thing is that they may be available only to professional providers in the public system and often have very high case loads. Try to find out if they may be supporting a local family support group and attend the group to gain access to their expertise. Once Autism is in your life you will have to get used to a loss of the kind of easy access you have had before.
When will this get easier for me as a parent--will it always be so impossible to manage?
It does feel impossible at first. That is because when Autism first comes into our lives it hits us pervasively across all our own developmental resources as parents. The physical, mental, emotional and cultural demands seem enormous. That is because we do not yet have the inner and outer resources we need together and getting them together is difficult right when we are feeling the sorrrow of loss for a beloved child. In addition, we are walking a rare and complex path no one else sees but us and that can make this a very isolating time. Hang on these things will pass as you gain new knowledge, awareness skills and abilities you need to parent and teach children and adults with Autism. Just be sure to take good care of YOU right from the start. You need this and this is your child's number one need--to have a healthier, thinking, calm and centered parent who is learning how to be the parent, who is our main life teacher. You can do. Just keep going.
Each and every parent, guardian, teacher, therapist, and health care and service provider must choose a path to live, work and cope with the impacts of Autism. Even if we choose to do nothing, withdrawl and refuse to particpate, that is a path, and one that will require that we get the help we need to manage how we act out our decisions about caring and serving people with Autism as individuals and as a group. Therefore everyone, from the person who is deeply involved and committed to learning best practices to the most well or ill-intended person who withdraws or uses worst practices, WE ALL NEED SOME KIND OF ORIENTATION TO AND TRAINING IN BEST AUTISM PRACTICES ASAP. This is the universal reality we share in relation to the mutual impacts of Autism. Every person with Autism needs to have people without Autism choose a path when Autism comes into our lives, homes, schools, workplaces, and communities. The true courses and boundaries of the paths we choose from are determined by the ethics and effectiveness of intervention models we are ready, able, and willing to walk. This will, most often, relate to how value-able and use-able we feel any one approach is to us as adult providers. Research shows that when choice and a model suites the family it serves the individual child with Autism best. This is because people with Autism are dependent on us for best practice approaches and families tend to use the ones we choose that match our resources, talents, motivations and styles the best.
While we have talked about family-centered planning in another red link, we want to be very clear that family-centered planning can very much include a family member turning model decisions and intervention work over to service provider teams while we figure out if we will be getting more ready, willing and able to particpate. This is particularly true during the first few days, months and even years after hearing the new of diagnosis. This new can be so devastating, and new information so confusing, and new roles and obligations to our child as our beloved baby that we will need this help. Therefore, no family or service provider need make having a choice an obligation. Letting someone else make these choices is a valid family-centered choice.
"Where can I find use-able information about how to become a positive influence for people with Autism and our family and service providers?"
The very next human developmental goal for those of us who must live, work, and cope with Autism is to find and learn about effective intervention models. Therefore, identifying our shared human needs and the specific resources that match to who we are as individuals and members of diverse groups is a priority. This web page is designed to offer one launch pad when you are ready, able, and willing to explore the realities of Autism. Know that it can take years to make that journey, because this long hard trek always takes us across the entire able spectrum of human development and back again many many times. This is why being a family or service provider to people with Autism across our life spans is not just a job, it is an "outer-able-space" adventure. So get ready for take off!
"Where can I go to get the help to intervene in my child's development?
This is the question that compels families in the first year after diagnosis. Good answers are the antedote to the deep sorrow, hot rage, or cold terror we may sometimes feel deep inside at first. The healthy empathy, high energy, and intense focus that each of these emotions can foster in us as parents, are all effective and realistic remedies to our own pain and our child's problems too. So do not let anything or anyone deter you from your search for the help you and your child need--not even yourself. Keep going, stay the course, and find a guide with experience to help you find your way where you live.
That is right--where you live. In almost virtually every case, we would not recommend a sudden move anywhere during your first few years of Autism intervention programming. We understand that the belief that there are much greener pastures somewhere else will create the urge to run. Part of that urge is just the desire to run away from this loss--all we parents know that feeling well. It is better to deal with it with all your home base resources around you. You will find that funding is tight everywhere in the world, and U.S. federal funding laws and public program regulations are used to restrict the creation of intensive model AUTISM specific programs in most states. Private direct service programs that do exist are very expensive or hard to get into as quickly as your own child's best practice intervention programs need to start. There are not many these days, and those that do exist have waiting lists that will usually outlast your childs critical early year period of optimum intervention impacts. Other's are so expensive, or not based on establisehd best practices to do well. Exhausting yourself or your resources right away can unwisely risk your whole families future and actually deny your child the one person that its their most important provider. Moreover, if you have financial resources it will actually cost less to bring great expertise to you. Therefore, your most important job is to avoid stress of the move if it will compromise your adult energies and put your family's functional foundations at risk during the critical first year window for earliest intervention. Your own short and long term resources are as important to protect as your child 's needs for early intervention may seem to be right now. All research supports this finding, so don't be mislead by miracle stories of cures or families going some great distance. If you look closely to those stories the parents were all putting in all their time to their child's program--no matter what kind of intervention model. It is your, your families and your team's time with your child that counts, not where you are when you give them that time. So you getting training matters.
Do not worry. In reality, getting yourself started on comprehensive parent training, in any one model you may choose is the very best practice and it is affordable and avail-able online and at conferences that cost so much less than any move will cost in time and money. Experts in Autism constantly travel the nation to provide trainings and there are many effective books, tapes, and truly expert providers that will have usually been developing for decades, right in your area. They just seem hard to find at first, because you do not have a map. This site is one such map that can help you begin to recognize places you can find services. Your first step is always to find more experienced parent peer-mentors in your city, state, or region. They can quickly guide you to all the Autism resources near you. (Be sure to tell them you want to hear about ALL the resources and then their opinion about them. Then contact another parent for another perspective.) Community connections like this will let you and your child very quickly gain access to best practice models in your location over your life span. This parent-as-life team-leader approach is more effective long term, than any shorter term clinical work with any one expert provider in any one setting. So don't run far, just walk all around all your nearest Autism community support groups and learn about your local resources FIRST. THEN you will most likely be happily surprised at the huge base of support available from experienced parents, many of who will be using the model you choose. Then get listed on mail lists that send out training notices. They can easily connect you to the professional providers and trainers that have supported them in your locale.
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