Dear Parents:

These are the general stages I went through as a parent of a child within the world of Autism. I share these with you as you might see yourself somewhere in these stages and it might help to know that as parents we are going through a continuum on how to take on Autism, Autism Spectrum Disorders, Aspergers, PDD, ADHD/ADD.

I believe this path represents and connects us as a community of parents with children in Autism. We are all travelling towards becoming a Voice for Autism. Take a moment to see where you are in this process and make a note of it in your journal.  I have not put a timeline except for the starting point for us, because this takes us into a place of comparison, not of joining up in a matter of connectedness in the progression through these stages.
The Awareness Phase (starting at 18 months)

Stage 1: Awareness that something is wrong

• Noticing physical delays in movement, digestion, and coordination
• Seeing a child disconnected, slipping away from our world, without socialization
• Seeing a lack of eye contact, speech, and being very slow to respond
• Observing interest in objects, obsessions, repetitive behavior
• Having high fevers that spike and disappear quickly. Being demonized by hospital staff on interest in delaying vaccines and questioning.
   

Stage 2: Emergence through Adult Education and Learning

• Reading and researching to find out what it is, what is causing it, and what to do
• Staying up late at night reading on the internet
• Feeling doom and dismay, isolated, yearning to know how this came aboutConfusing times: not sure what to do or who to turn to
• Sweeping it under the rug by talking myself out of the idea that something is wrong, having others say I am overreacting, give him more time, he will be fine
• Having others also tell me they think something is wrong

The Inquiry Phase
 Stage 3: Seeking Outside Help

• Seeking out professional help from pediatricians, medical specialists, therapists, healing arts professionals
• More searching, learning, willingness to go for broke to find answers
• Financing personally to give more options
• Misdiagnosing not finding answers to causes
• Receiving multiple diagnoses and clues to what it could be
• Getting advice that includes too many medications and not enough integration
• Exhaustion, dismay, and breakdown
• Realizing the magnitude of being your child’s advocate in the world

The Diagnosis Phase
 Stage 4: Getting a Diagnosis/ Going Into Crisis

• Feeling myself under an avalanche of disbelief and relief at the same time
• Feeling that now I know what it was we were dealing with
• Coping with having all the doors slammed on my son’s future
• Finding an instinct to get in there and fight for my son to improve
• Believing with all my heart that the body can heal given the right support

Stage 5: A Parent Acquiring New Skills

• Finding the language to speak about your child to others
• Realizing you are on a long voyage and you are in charge of the direction you sail
• Finding ways to balance and wiggle through this to find what your child needs
• Becoming a rock for your child to rely upon
• Understanding a medical specialist, a therapist, an attorney, an educator, a government representative and all the systems that surround these worlds ( insurance, healthcare, and educational disability law)

Stage 6: Finding and Inventing Solutions

• Finding people to guide and help navigate the diagnosis
• Starting therapies
• Having breakthroughs (little and big)
• Putting the pieces together like  a puzzle
• Developing a strategy around the child’s strengths and weaknesses
• Remediating deficits
• Slowing down lifestyle and beginning to heal

The Rebirth Stage
Stage 7: Creating Possibilities

• Feeling anger when reflecting that this happened to our family
• Realizing acceptance of being where we are
• Finding joy and laughter and re-creating  family
• Questioning what you thought you knew this to be
• Forming an opinion about what Autism is
• Joining and making support groups
• Helping to free the child trapped within the child
• Finding spirituality and belief that all things happen for a reason

Stage 8: Giving Back to the Community/ Getting into Action

• Knowledge Sharing about Autism
• Fighting and cheering for others
• Educating others so we can alleviate the struggle of passage
• Placing Autism on notice that it will be disappearing from the earth 
• Protecting the future generations
• Creating a safer, cleaner environment
• Maintaining a presence in the family and staying focused on what matters most

Stage 9: Parent as Possibility

• Watching new doors emerge and open for the child’s future
• Re-relating to Autism as having created a new view on life
• Finding my child’s giftedness and unique outlook on the world
• Parent redefined as a Voice for Autism connected to humankind
• Loving, cherishing and guiding a child into our world

Stage 10: Coming Through Autism

• Blossoming redefined as endless hope and courage
• To be determined by you and your child as and how you wish…