MEDICAL DIAGNOSIS, BIOMEDICAL PROTOCALS
& THERAPEUTIC SERVICE RESOURCES

Finding professionals who are well-trained and experienced in Autism is getting easier all the time, but Autism is still a rare condition and so, it is still a great challenge for any new parent. Our best advice is to find local Autism support groups with parents who have experience and who have faced this challenge been successful at getting the help they need when they first started out. Also, go to Autism Society of America website www.autism-society.org and find your state and local chapter contacts and call those representatives and go to the state website, which will usual have listings of reputable Autism professionals and locale support groups and other organizations that help new parents. The National Institute of Health also has listings of Autism Centers of Excellence projects around the U.S. One may be near where you live. You can find more information at their website www.nih.gov. In most states, one of the public universities will have an Autism clinic related to diagnostic and evaluation services and one of the state or central city colleges will have an Autism education program research center. These usually provide outreach to families needing services and programs. Once you begin to find people you have the Autism expertise you need f working with children and families using well established best practice methods of Autism diagnosis, evaluation, assessment, and intervention, then you will begin to experience this journey and both how difficult it can be but also what real relief feels like too. (This kind of provider with Autism expertise is not someone who has seen a handfull of children in a clinical setting where they see them for an hour here and there and they will know how to work with you as a full life span team member--not "just a parent"--so watch out for that kind of provider and then grab hold. Along the way, in the first few years you will recognize what mode approach is right for you.)

MEDICAL DIAGNOSIS: Autism involves problems with the development the central nervous system in infancy and changes in how the brain functions over the life time. Even in its mild forms it is a very serious medical condition that requires diagnosis by a well-trained medical professional with a depth of experience working with children and adults with Autism and our families. Initial diagnosis may need to be done by a child psychiatrist or neuropsychologist, particularly in the case of more mild forms of Autism, Autism that is combined with other medical, mental health, and developmental conditions, as well as later age of diagnosis. However, pediatricians and child psychologists familiar with Autism may also diagnosis Autism when the presentation is clear and more significant. The most important advice in diagnosis is DO NOT WAIT AND SEE. This is because early-as-possible diagnosis allows early intervention to begin immediately. If there is any question of Autism, appropriate best practice Autism inventions should begin immediately. Time is of the essence when any young child's brain development is involved because the earlier inventions begin the bigger difference they can make. Best Autism practices can only help any child struggling with communication, social, functional, and sensory-motor developmental delays and losses--even a child who may be typical after interventions are provided--even a typical child would benefit from them. So the only risk is to not pursue timely diagnosis and accurate baseline evaluations. Most state chapters of the Autism Society of America provide listings of recommended providers, including medical diagnosticians.

BASELINE AND FOLLOW-UP FORMAL EVALUATIONS: During the process of diagnosis you may also be referred to a number of different providers to do baseline evaluations to get a clear picture of the particular communication, social, functional skill, and sensory-motor strengths and weaknesses a child has compared to typical peers at that age. This is important to get done as soon as possible because it will set the baseline to measure later regression (rare) and progress (usual). Because Autism involves a wide spectrum, of a splintered developmental profile (combinations of very high and very low skills, which are not well integrated) with a unique presentation in each child, these evaluations will requires work with well-trained and experienced evaluators from various fields. School Psychologists, Educational Autism Specialists, Speech and Language Pathologists, and Occupational Therapists are common sources of formal evaluations that use both standardized testing in controlled settings and adaptive interactions in natural environments. All evaluations need to be conducted in an effective and sensitive manner to provide accurate results. These multiple tests across fields of expertise and settings provide a more complete picture of this complex disorder. The team of evaluators should meet and discuss their results with parents in a clear and understandable way. However, sometimes parents are left with contradictor test reports. This is a common finding in evaluations without a team approach--it does not mean that your child does not have Autism. A handful of evaluations with all different findings is actually common in Autism. Work with an Autism professional, such as an Autism specialist in the schools or a private Autism consultant to get the help you need to interpret evaluation results. Just keep pushing to have these evaluations done and to get a clear explanation of what they mean. You will likely face both external barriers to getting and internal resistance to letting this information in. That is usual in the world of Autism--just keep going--in time you will be able to learn and understand what is happening for your child. Then, get follow-up evaluations to track what is happening. In the early years that may happen every three to six months, and later every year to three years.

ONGOING INFORMAL ASSESSMENTS: Diagnosis will provide an accurate name AUTISM medical/mentalhealth/developmental disorder condition that lets you get referrals for needed evaluations. Evaluations provided standardized comparisions by age that measure discrete strengths and weaknesses that determine eligibility for any medically-based treatments and educationally-related services. Parents are often desparate to get these done and then disappointed that the information does not feel use-able and is not that valued by the providers they are working with next. Do not worry. Children and Adults with Autism are unique in their high needs for ongoing informal assessments and detailed data-tracking of all their splintered skills levels and how they are and are not integrating well. Once you are in therapeutic and educational settings you need, then the work of ongoing informal assessments begins. This information is often gathered by parents, teachers, therapeutic service providers, and other program providers. Ongoing informal assessment work is where the action is in the world of Autism. All best Autism practice models have this ground work in common, althought their specific purposes and approaches will differ in important ways that help each model work. Moreover, parents are often relieved that this process involves new providers getting to know their child in ways that are not possible in diagnositic and evaluative settings we must get through quickly. Just remember that your child will present differently across settings and people and that this is part of the nature of Autism that you cannot see until it happens. Both parents and professionals need to know, understand, appreciate, and negotiate the realty that each of us has important pieces of the Autism puzzle for each child and student. It is not a matter of who is wrong and right it is about working together to support the child's program work across home, school, work places, and community settings.

AUTISM INTEVENTION AND PARENT-AS-PROVIDER JOURNALS: The rest of the web page talks about various intervention resources and options. At Threshold we encourage parents and professionals to keep their own Autism journey journals. This is a private record where you can record what is happening for you and for the child and student with Autism, just from your perspective. In this journal you can sort out what is objective (sensory-based information that describes what a video camera would capture with best neutral explanations) and what is subjective (your interpretations and feelings that come up with the observation). By gathering and sorting out this information for yourself, as you learn more about Autism, your expertise and accuracy of obsevations will grow by leaps and bounds, as will your sensitivity in working with others in this same situation. Finally, this journal will capture critical information that all the other modes above will miss. As the years pass, this journal will be worth its weight in gold later. Trust us on this advice.

NOTICE: THRESHOLD IS NOT A MEDICAL PROVIDER AND THEREFORE, THESE ARE ALL INFORMATION REFERRALS, AND ARE NOT PRESCRIPTIVE IN NATURE.

Families should ALWAYS see your child's medical doctor to discuss any and all forms of medical testing and interventions, and your doctor, a registered dietician or alternative health care provider BEFORE using any and all suppliments or special and/or restrictive diets for children/adults with Autism and/or other health conditions. ALWAYS. These providers may not agree with each other or your choices, but you need to keep your primary provider informed, in case the combination of protocals you may try might have side effects or drug interaction risks.

AUTISM RESEARCH CENTERS:

Resources listed here will take you to the research centers around the nation with which they are affiliated too. Families may write or email these agencies for written information. But they do NOT generally want or take or return family phone calls for individual questions and answers.

A) PUBLIC

National Institute of Health (NIH)/Mental Health (NIMH) Autism Division
Contact: Dr. Maria Bristol-Powers
Formerly Early Childhood Director/UNC/Division TEACCH
Phone: 301-443-4513
Email: nimhinfo@nih.gov
Web: www.nimh.nih.gov

Kirkman Labs
We always suggest that new families get to knwo about low cost and risk and high quaility and benefit nutritional supplements that help our kids and parents function better. Call Kirkman's and talk to their technical staff--they are very helpful and not sales people (Internet ethics FYI this is not a pyramid scheme and Threshold has no other connection, financial or organizational, than to passing on this source for your information.) Kirkman just provides specialized nurtritional supplements formulated for children and adults with Autism, which were Recommended to THRESHOLD by the Autism Research Institute decades ago and we have enjoyed watching the affordable, available, and most often positive results for kids and families ever since. Many (but not all) families report great success in improving their children's health and functioning within a short time. Sharone says: "HAVE THE WHOLE FAMILY TRY THE COD LIVER OIL DAILY!" You may be surprised how well you ALL may begin to feel and function better). It is a risk-free, affordable and well-known neurological health support for people with and without auto-immune problems.
Phone: 800-245-8282
Email: kirkman@portweb.com FAX: 1-503-682-0838
Web: www.kirkmanlabs.com

A field note on Autism Prevention and Pregnancy--Our dear Dr. Gene Stubbs is back from retirement--not to practice as a child psychiatrist again--but to continue his research. He is currently conducting a study on Vitamin D-3 in very young children and their pregancy moms--to prevent Autism in sibs/ improve symptoms and treat late onset Autism. Preliminary test results show moms and kids have extremely low below normal levels of D-3 and the improvements in participants inside and outside the study are very encouraging--even exciting. This is a harmless trial you can do at home too and Kirkman provides a good quality Vit D-3. Email Sharone for a LEAP appt for more information and we will refer you to Dr Stubbs study.

NOTICE: It is important that families understand that nutritional diets and suppliments do not offer any kind of scientifically proven cures for Autism, particularly not any evidence that can be applied in any one case, such as your own child. Instead, they have show to be effective in improving many children's biological health and neurological functioning, which can support more optimum development. Such alternative approaches have shown to provide positive results for about 50% in children with Autism in replicated scientific studies. This warrants ongoing study, to determine if and how certain physical conditions correlate to children having/not having Autism, and whether the changes of Autism are the source of those conditions or whether those conditions contribute to Autism. The centers above will provide you with up-to-date tracking and review of such data. It is important to note that research continues to show that about 1/3 of the children show significant improvement by age five, about 1/3 show some improvement, and about 1/3 are stable in their initial Autism, and a small number regress further over time, all with or without unusual interventions and experimental treatments. This is a usual pattern in difficult to treat conditions other than Autism. It is called the rule of thirds. That said, the rule of thirds is a collective statistical framework. Children can migrate from one of these groups to another and smaller studies show that established best practice options DO support optimum outcomes that do realize hidden and unexpected potentials in SOME of our children. No statistical study can promise any particular outcome for any one child with Autism--not ever--because our group does not represent just one causal condition--we are people with a pervasive developmental disorder syndrome of splintered and unique symptoms that present along a wide and diverse spectrum made up of numerous apple barrel sub-groups of known and unknown predictive causal factors and complex and uncertain neurological conditions. This makes us a VERY difficult population to study and get acceptable research findings.

Therein, it is also important to urge parents to not delay beginning early-as-possible and more intensive education intervention (20-40 hours a week across home-school-daycare providers.) This is the area of intervention with proven long term results for people with Autism, across the spectrum, regardless of the cause of their Autism. We know very well, the first impulse of a loving parent with resources is to put all your emotional eggs and dollars in the biomedical-cure-it-basket. Just try to understand and accept that educational Autism intervention will be both necessary and important regardless of the cause of your child's Autism, or the outcomes of even the best biomedical trials of treatment--because if your child is showing significant learning delays now, then that need is here now, and you can do something proven to help now. We continually see parents putting all their hopes in one narrow treatment basket that may show immediate, but less pivotal, symptomatic improvements. Yet this means that they miss out on the significant life span progress that is possible with well-established early Autism educational approaches, which an be very affordable and very effective, with little risk of failure or harm. Please, put some of your first eggs into a life span educational approach basket first. You will not be dissappointed. The bonus is that you will soon have solid objective baseline data for sound biomedical trials. This is a guide suggestion, based on research and practice.