Wednesday, June 11, 2014

Faith, Hope, Love & Aspirations: a Blog & Community for the Families of those on the Spectrum

Faith, Hope, Love... and Aspirations

What do you do when you realize that your loved one, your child, your sibling, even your parent or spouse is on the Spectrum?  Autism Spectrum Disorders(ASD) are so varied that two individuals with the same diagnostic label may not seem at all alike in personality or temperament or in their therapeutic needs. The further you go in researching and seeking understanding of what truly defines ASD, the more easily you will recognize what it is or is not in family members. There are those so "high-functioning"(HF) on the Spectrum, that they may live an entire lifetime and not have been suspected of, let alone diagnosed with, anything more precise than being "difficult to live with". They may have very, very successful professional careers, make significant contributions in their fields of expertise, they may re-write the very basics of the underlying theory of a discipline, and revolutionize human thought in such areas... and still be very "difficult to live with". Possibly, these very intelligent individuals may have seemed to present issues primarily in substance abuse, alcoholism, bi-polar disorder or narcissism and found no help or success in treatment for these things because of the underlying Spectrum issues having gone unrecognized. So, very possibly, you may be the adult child, sibling, spouse and parent of, say, 7 different Aspies, and approaching or have passed mid-life, before you ever come to learn the definition of Asperger's Syndrome or other Autism Spectrum Disorders and realize how deeply it has affected your life. You could well spend decades of your life wondering why it is just so very difficult to relate happily with certain family members who actually profess vehemently to love you.  Have you wondered why that certain someone, though quite intelligent, clean, dry, sober, law-abiding, is still just the source of so much pain and misunderstanding in your life?  And then somewhere along the line, the term describing a condition called Asperger's Syndrome (AS) comes to your attention and you have an epiphany, an "Aha!" moment, and as all the intellectual and emotional dust settles, a paradigm shift, all the multicolor puzzle pieces fall into place before your eyes and you see it.  This person is actually "wired differently".  They see what they see and nothing more. Actually, our trying to explain to them a perspective beyond their own may cause them great confusion and very real distress-- producing an otherwise incomprehensible response of explosive anger or sudden complete withdrawal and silence.
What do you do? You go back to the basic, fundamentals of who you believe you are and who made you and why you live and breathe at all. You go back and ask, "What now? What does this change? Were the tenets of the faith I was living up until yesterday still applicable and strong, and right and true enough for me to continue to live them from here forward?"
How do you re-examine your life philosophy and continue to function? You might have to go to ground, go into hiding from some who make needless demands on your time and energy. You might have no choice but to continue much of life's busyness and have to just turn off extraneous media and technology to hear your own thoughts clearly and really feel some of the feelings these thoughts produce. You might seek out counseling or support groups-- be very careful here-- good, wise, well-meaning people can give a great deal of *good, solid, proven advice* that actually does not apply whatsoever to relationships with those on the Spectrum. Believe me in this, if someone is not professionally trained specifically  in dealing with ASD, especially Asperger's Syndrome, or does not have personal, extensive life experience with close family members on the spectrum, their advice can be worse than inapplicable, it can be absolutely damaging for you or your loved ones.

I will tell you what I needed to learn to do: protect myself, think for myself, think about and care for myself.  The spectrum member of the family is one with "high needs", but that does not mean the NeuroTypicals (NTs) are entirely without needs. Our NT needs are just as real and just as important as those of the ASD person.  We need to remember or maybe realize for this first time our right to our own aspirations without explanation to satisfy those in our lives on the Spectrum.

aspiration [ˌæspɪˈreɪʃən] n
     1. strong desire to achieve something, such as success
     2. the aim of such desire
     3. (Life Sciences & Allied Applications / Physiology)
          a.  the act of breathing
          b.  a breath
     4. (Linguistics / Phonetics & Phonology) Phonetics
          a.  the pronunciation of a stop with an audible and forceful release of breath
          b.  the friction of the released breath
          c.  an aspirated consonant

There are many, many things in my life- very legitimate hopes, dreams, aspirations, and even very basic needs that the Aspies in my life just cannot comprehend.  I love this comprehensive definition of "aspiration".
Honestly, I actually, literally spent decades debating my right and need to manage my history of ASTHMA as I saw fit with more than one of the Aspies in my life.  After a lifetime of debating with siblings my right to hold my own beliefs and know my own thoughts were true... really it was just a progression.  So, my friend, go ahead and BREATHE.  You cannot live questioning your right to think and feel and move and love and breathe freely. You may have died on the inside long ago from doing just that.  If you have had individuals with undiagnosed Autism Spectrum issues in your life for any length of time, you may have become so disoriented or confused that you are unconsciously holding your breath waiting for the next thing, the next blow-up, the next meltdown, the next unprovoked outburst, the next withdrawal, the next argument that cannot be resolved, the next irrational demand for you to surrender another piece of your personhood...

Please, dearest, go ahead and breathe, deeply and freely. Weep if you must. Be gentle with yourself. Be kind and encouraging to yourself. You are NOT ALONE.  We are here building a faith community that will help you remember to breathe while you find that God has this, too, under control and He will walk with you.

The Hebrew word for Holy Spirit is the same for breath.  As the Father hovered over the lifeless clay of Adam and breathed into him "spirit" and "breath" and he became a living being, let Him hover over you now and breathe life and breath and spirit into you so that you may begin to live again in freedom. In the name of Jesus Christ, receive new life.  We can walk this walk with the Living God dwelling inside us. We can do anything He is calling us to do in the name of Jesus.