Who can tell me if my child may have Autism or a related disorder and help us with it?
The professionals who help our families with Autism are: 1) screeners, 2) diagnosticians, 3) evaluators and assessors, and 4) intervention program planners and providers.
Currently the main community screening sources are other parents, day care providers, preschool teachers, and pediatricians. However, how well we screen is tied to our knowledge, awareness, skills, and abilities in relation to understanding Autism. If we have no experience with the relatively rare disorder of Autism it is very difficult to impossible for us screen for this complex condition.
The main diagnositic professionals are found in experienced medical and mental health professionals (developmental and behavioral pediatricians, pediatric neurologists, psychologists, or psychiatrists who are specializing in Autism) who, along with family members, teachers and therapists must record and report on our careful objective observations of the child and our caringly interviews of parents about our records of a child's early and current development.

Educational and rehabiliatative therapists are professionals who may also provide Autism symptom screening and various kinds of necessary and useful service elibigiblity evaluations (identifying criteria which allow us to access medical and educational funding sources that relate to Autism) and functional skill assesments (lists of our children's individual strengths and weaknesses). These evaluations and assessment may also aid in diagnosis, but they are mainly intended to access funds to develop educational and therapuetic intervention programs.* However, these educational and rehabiliative therapy providers cannot diagnose the Autism itself.

Know that diagnosis usually requries a team effort over time--usually from a few weeks to months. Parents will predictably go through a series of feeling upset and confused that is different than a typical grieving cycle. Autism is hard to understand and does not have clear time limits in its impacts. Therefore, it creates a more spatial reality of significant life span loss for families. Therefore we need guideance in how to BE, and how to DO things with people with Autism.

Who can help me prevent my child from having Autism or a related condition?
Anyone who lives or works around the early childhood care or education work world and who is familiar with the Autism Spectrum and its common developmental features and and atypical behavioral characteristics of children with Autism, may be able to provide informal screening feedback by identifying early warning signals of its earliest onset. However, because many known and unknown factors may cause problems in the development of the structural or biochemical systems of the brain before the child was born, in the vast majority of cases, Autism may not be apparent, and so, not predictable until after 12-18 months. This is because all newborns have yet-to-be-developed sensorimotor, communication, and social skills and so we cannot distinquish their typical healthy emergent developmental stages from the valid criteria for Autism until they age beyond early infancy. However, more recent research into video tapes of the infant development of children who later have Autism are revealing some predictable patterns of movement, lack of vocalizations, and atypical facial expressions that may identify risks of this condition much earlier. But based on the current criteria a child must be at least 18 months old to reliably confirm a diagnoses, in all but the most extreme cases of classic profound Autism.

As this screening research is affirmed, its findings could become very helpful in creating new early identification tools that would afford us early-as-possible treatment, and possibly new treatments for the reducing of the severity of Autism or even effective prevention of the condition someday. However, the clearest predictors and common early symptoms of Autism are most often emergent from the ages of 18 to 32 months of age, and in the case of Aspergers, from 42 to 60 months of age. However, because children's development widely vary, less experienced professionals may feel relucant and justified in not diagnosing Autism as early as possible. Experienced diagnosticians will have the specific knowledgable, awareness, skills, and abilities to elicit behaviors that distinquish children with Autism from children with other conditions or typical developmental profiles at the earliest possible age so families can access best practice options.

Who can tell me what may have caused my child's Autism?
Researchers can provide us with general findings about predictors of the onset of Autism. Congenital causes of Autism may be present at birth and due to either genetic or random natural/physical environmental factors which occured during pregnancy. Premature infants are more likely to develop Autism than full term infants. However, this is true of most developmental disorders and so is not predictive of any one child having Autism. It just represents a risk factor. Exposure to a number of illnesses have proven to cause Autism in the past, such as CMV, a respiratory infection and Rubella (german measles). Toxic environmental or biochemical exposures (i.e. to lead, mercury, or neurotoxic pesticides) of parents, and particularly pregnant women and infants, have been shown to correlate to Autism as well as other developmental and learning disorders. Autism has also been related to substance abuse by birth parents or exposure of the mother or child to other neurologically toxic medications. However, many other children exposed to these same factors do not have Autism. Therefore, exposure to any one environmental factor, alone will not necessarily predict Autism in an individual child. All these are just factors that correlate with Autism. Not all causes of Autism are tied to overly negative causes. New research suggests that the pattern of unique growth patterns of larger head sizes and over-build neurological features of infants with Autism may become useful in either identifying a cause or to predict certain types of Autism. Therefore, in most individual cases, where there is no single genetic linkage or a specific physical cause of Autism that has been identified, it is hard to predict which individual children will have Autism or to even know its specific causes in any one case.

The greatest long term difficulty with predicting Autism is that we are not yet clear about all of the many etiological (causal) and ontological (onset) patterns of the Autism Spectrum versus the individual effects of Autism within each infant's body and brain and how this interacts with their nurturing environments. Therefore, any predications must exist in realistic relation to the long developmental history of each child from before conception through early childhood and beyond. The huge number of events and factors which exist across time and within this highly hetergeneous group that is people with Autism, make it very difficult to establish any hard and fast "facts" that we can apply, in order to make predictions across our entire population, let alone any one child.

Who can tell me what my child will be like when they grow up?
No one can accurately predict the life span outcome of any person with or without Autism. Yet, this may be one of families’ most often asked questions. Some providers may choose to paint what seem like grim pictures for all people with Autism, others very vague ones, still others unrealistic ones of only ideal outcomes for all our children. Reliable behavioral and developmental research tells us that any one individual Autism may not follow any such predictive prognosis paths until after both early intervention benefits, and the later instability of puberty has past between the ages of 16 to 19 years of age. After that age, outcomes are best predicted according to the quality of our life span Autism services and vocational programs, after the end of all public school services at the age of 21. Novice providers who may have once been compelled by a very determined parent to try, have learned: "Woe be to the one who predicts the future of a child with Autism --for they are here to teach us all humility in our powers to predict almost anything." Experience teaches us that only time, efforst and community support tells our life span potentials. Therefore, the reality is that no one, no matter what our professional skill or experience, can look at any one person with Autism and give a family any clear or accurate prognosis. What we can do is guide folks onto the model program paths that predict good to optimum statistical success.

Some family and service providers may strongly protest this unpredictable reality and claim that they know what is coming for a certain child, because of the strengths or weaknesses a child presents at an early age. I can agree that we do know that positive and negative factors are statistical predictions of outcomes across our developmental groups. But there is no reliable link between those group statistics and anyone individual with Autism. This is a statistical finding too. Yes, it is good if our child speaks before age 5. However, with Autism we are not out of the woods of what may yet happen with his/her social cognition or the biological upheavals of childhood and adolescence. Yes, it is most worrisome if our child does not speak by age 5. However, many well spoken and even famous persons with Autism did not speak much until age 5-10. So predicters of any one child's future beware looking into any prognosticating crystal balls. For example:

After adequate intervention children with Autism may also then reveal reliable test results that may identify that they have gained or lost secondary conditions of changes in our intellectual capacity that may range from higher to average intact intelligence in certain splinter areas within an average test range of mental retardation in the high functioning to low or non-functioning levels.

(By the way there is no one such early diagnosis as "High Functioning Autism." In standardized diagnostic criteria this would actually mean the child has been tested as having mild retardation and an unspecified degree of Autism. Instead, a young and more verbal preschooler with Autism would more accuratedly be given just a preliminary diagnosis of "Mild Autism" without any losses of functional communication capacity, and no currently measurable levels of mental retardation. Many children with mild Autism are also erroneously getting an Asperger's diagnosis. Some professionals feel the distinction is unimportant. A review of the criteria will show that there are very significant differences in the early and life span profiles that do matter.)

Any such detailed diagnosis will need to be reconfirmed between age 5, and again before and after adolescence to be validated as a final stable developmental diagnosis. Therefore, any initial diagnosis must be considered a preliminary baseline set of identifications and not a final answer. This is why it is very difficult for professionals to provide parents with a reliable prognosis of any individual child's Autism outcomes. (However, there are serveral smaller subgroups of Autism which can be identified due to their known common causes, specific additional features, and more predictable long term outcomes. Your Autism professional can screen for and explain these conditions (i.e. Retts Syndrome (girls only) or Landau-Kleffner Syndrome (late onset/EEG tested).

Who can help us learn to live, work and cope with our children's/students' Autism?
Parents must get help from a number of people to gain the biosocial survival skills we may need. We usually need a trans-disciplinary team input. We may need medical providers to provide our child’s diagnosis and biomedical screening. Mental health providers can support for our family's needs and child’s evaluations. We will need autism specialists and special educators to plan our child’s publicly funded programs. We may also be able to access early intervention support servcies from rehabilitative therapists at our local school or clinics, such as speech language pathologists, augmentative communication specialists, occupational and physical therapists, music, dance, and recreational therapists, and later vocational skills training specialists. However, parents may feel a little overwhelmed by all this help at first. We will need time to both gain access to services and process all the information professionals may provide to us. Therefore, another important network connection within the Autism community will be your local Autism family support groups. Experienced parents can be great peer mentors. We have the informal training experience that comes from learning how to survive the first year and later decades of living, working, and coping with Autism. We can help new families benefit from our collective memory of what works and what does not work. The sum of our knowledge, awareness, and skills will be translate-able to your own child's unique ableness. This can afford your family and child invaluable 20/20 hindsight and years of real life experience and peer back-up AT NO COST. This helps us avoid all the usual missteps families can each make, even with the best of intentions. All these community resources help us all hold onto the hope that together we can all recover from the biological and social impacts of Autism. We must walk its path one day at a time---seeking the courage to change the things we can---the serenity to accept the things we cannot--and the wisdom to know the difference. This can be our shared road to more resilient able life survivorship.

* Be careful to FIRST check your insurance for whether they cover Autism conditions, or not, before you release any Autism diagnostic or evaluation records to your primary provider or health insurance. Premature release of Autism diagnostic records across your medical team can cause a denial of services by insurance companies, and yet faciliate getting educational services. Going to Autism family support groups is the main way to "learn the ropes" of the funding systems. Your medical and educational providers may not be allowed to guide you when it comes to figuring out how to navigate the obstacles to accessing funding sources.

Who can we connect with to talk about the emotional impact of this diagnosis?
Everyone mentioned above, are all important members of our Autism community. Hearing your child has Autism may feel truly tragic and very sorrowful for new parents the first time we hear it--no matter how carefully providers try to prepare us, or how well the diagnosis is described. As a matter of fact we can be angry about being prepared and by accurate news too. We may often feel shocked or angry and believe that we have gotten the news too fast or too slow, too soon or too late. (Faster and sooner is better as long as the news is not presented in a very abrupt or totally insensitive manner.) We may also feel relieved and even bitter sweet joy in finally having a diagnosis for what we have been dealing with no name for much too long. However, the mutual family and service provider experience of dealing with this sharing this bad news may make us all feel very upset and sad-mad-afraid inside for different reasons. It is O.K. to tell each other this.

At Threshold we deeply understand that reality, and know how hard this time can be. Each of your family members, and particularly parents, may need more time and space to deal with the impact of this diagnosis. Even years after we get this hard news, we may continue to need support in processing this reality. This does not mean we are necessarily in denial. This a very complex condition to understand and it is one that continues to reveals itself to us over time. Because families of atypical able life losses (like Autism) must emotionally struggle in our survivorships at first, and over and over again across our life spans. Yet, whenever we do this work, we may we get messages we are not DOING our “grief process” timely, or that we are not BEING “good enough” in our faith. Providers may critique the linear grief stage “progress” of families facing Autism. However, most grief research relates to people facing a typical loss of life or wellness, particularly with sudden, unexpected serious or fatal illness or accident. In typical tragic life loss, we may work through initial upset states and reach a later stage of acceptance. This is a natural process for such circumstances, because typical life loss events usually do have a more clear start and finish.

No one ever dies from Autism and it is not an illness with a single, final, or very predictable course. This lack of a predictable start or finish means that a linear temporal grief process may not apply. Autism is a profound able-loss that may hit us like a train or creep into our lives like fog. It soon takes over all the spaces of our lives, and time does not change this, or heal it at all. Autism must be lived each hour, day, and year of our lives, and so, our living is done in a space of sorrow, with unearned, and unending, lifelong losses. We cannot “just accept” this loss and move on from its reality, we must BE in this loss, as we adjust to its ever widening impact on our lives. Therefore, our families cannot reach some final stage of acceptance. Why not? Because, if we live our whole lives with the atypical able-loss of Autism and an ending struggle to access the services we need, which are both truly unacceptable conditions for ourselves and our children. Therefore, many families’ atypical experiences with Autism may be better interpreted through the concepts of needing ongoing support to make functional adjustments in our awareness of the mutual impacts of Autism, and knowledge of how to adapt to meet our mutual needs, rather than merely timely acceptance of the losses it has created. Now all that said, it is a universal truth that when Autism opens up this vast space of sorrow within ourselves it becomes a vessel for great joy over time. Threshold witnesses just how joyful a parent can be as our children with Autism reaches their fullest potentials. Our adjusting to our living with this well of sorrow within us can afford us all many visits to the spring of eternal joys, which fill our hearts with both healing dreams and very realistic hopes of recovering a wonderful life. But it begins with our immersion into the sea of loss.

Along the way we may all learn who we truely are, and the very most we will become. It is in knowing ourselves on this journey that we will deeply come to know each other as people with and without Autism. The life span joy of this unexpected discovering of each other is what softens the sharp pain of these early days, when we first realize how Autism has impacted our self, our family, and all those we care about and serve. Then our brokeness is transformed to a new wholeness.