When you find yourself with a child with autism, it feels something like being thrown into the water far out at sea. The safety and security of the known and familiar, is all at once out of reach, and you know that if you do manage to make it back alive, you will never again be the person you were before.
If you're lucky, you may find a small, but isolated island on which to regroup and gather your resources for the long and treacherous journey back to society. There are some that won't make it, but for most the journey, if faced squarely & with strength and courage will be rewarded in ways that are deeply treasured by those who can look deeply enough into the abyss, to find the gems that it contains for those brave adventurers.
Those who have been given the label of "Autism" have as much to teach us as we are willing to learn. Many of them have been born, so sensitive to vibration that much of this world can be unbearable to them. And watching their attempts to control, what feels to them uncontrollable, can be unbearable to us. But as we learn to accept their needs, and learn to not judge them by the standards handed down to us by others, and to be kinder to ourselves when our children don't fit where we are taught they should, the world becomes an easier place for them to live in, and for us to share with them.
I have found it to be an absolutely fascinating journey from fear and confusion and powerlessness in the face of what was to me very alien behaviour from my son...to feeling absolutely blessed to have an individual in my home who I feel at times has more to teach me than I have to him.
However there are few that share the blessings my son brings me. He has never made it easy for any but the truly genuine to get to know him, and they were for a long time, few and far between.It's been a solo journey for much of the time, -(Although thankfully that has changed in recent years) but my son & I have over time developed a relationship of respect and trust. We are still both growing, and learning who we are. All the goal posts I had as a mother initially were torn down, until I found a place where we could rest in the moment, live each day as it comes, and allow the future to unfold naturally in it's own course.
Although you may feel that you have been placed in circumstances that are beyond your ability to cope...you are not alone. It has taken me a long time to see the guiding hand behind our lives. Even if there's no one there on a day to day level, (as there wasn't for me) , that there was meaning and purpose behind what at first appeared to be thrust upon me as a random and very bad throw of the dice, has become very apparent as time has gone by. I can only assume that the higher forces guiding me knew exactly where to place pressure upon me, because the slow...and at times very painful process of transformation that came with the isolation & exhaustion of mothering a special needs child has ultimately been a liberating one.
I painted the picture at the top of this page not long after my son had been diagnosed at age 6. I portrayed myself as the scarlet woman, isolated, on an island with her alien son. This was pretty much how we were treated by other parents during his early school years. There is a common understanding amongst many people who have had little experience with autistic disorders, that, especially at the higher functioning end of the autistic spectrum, the condition, and it's manifestations, are purely a result of bad parenting.
I have to say first, that my son is at the milder end of the autistic spectrum. Severe Autism, associated with little or no verbal communication, or connections with others of any kind, and frequent repetitive and obsessive behavior(for example wanting to watch a washing machine all day, or rewinding a tape back and forth) is at one end of the spectrum, and Asperges syndrome, a high functioning form of autism associated with social and communication difficulties, and a broader obsessiveness (for example with a particular area of interest, such as trains) but that at times can also be associated with very high intelligence or giftedness, is at the other.
The line between Autism and other diagnosis, such as giftedness, ADHD and even Schizophenia, is sometimes a fine one. In fact it's my experience that there are elements that are common to all. But the labels only ever offer indications that there our other people in a similar situation, experiencing similar challenges...(and opportunities ...I think to think there is something positive to be gained from every situation). I have friends who have refused to label their child ever...at all, when their child obviously would benefit from having their needs met and understood.
I'm hesitant to ever give labels too much weight though, and I believe that our responses to our children have a huge impact on their well being, their development, their future and their potential. So a label to me is only a signpost...this is where you appear to be now. It is up to you to be creative and challenge the boundaries, and go from there to somewhere that will surprise not others, but yourself!
But if your child is struggling with obtaining language for example, it's helpful to understand the kind of brain that is experiencing this delayed development in this area. They may be very advanced in other areas. I don't necessarily see lack of language as lack of an intelligent and highly sensitized brain...in fact the reverse can be true.
The special needs area is full of all kinds of information, and so called "experts" the experts in my area were not very helpful...so I left them behind and found my own way. However my son is 15 years old now. There has been a lot of work in understanding Autistic Spectrum disorders, since we first came across the mental health system in New Zealand, and because it seems to be becoming more common, a lot more parents are sharing their experiences and what they've learned. The world of mental health professionals can be overwhelming, and it takes courage to trust our own instincts as parents and guardians of our children. It may appear that a lot of money is required to access the resources that our children need to thrive. I never had this, I never accessed any resources that were much help, apart from regular phone calls to a very close friend who also had a son with a similar condition, who held my hand, day to day, week to week and year by year. But....there are people doing wonderful work with Autism, if you can find your way through the conflicting maze of information and resources to anything that works for you....go for it!!.
I used to think that more money would be the answer to just about anything, but my experience with my son over the years and led me to challenge even this. Even without the expensive programs, there is hope. I can only share what I know from my own experience. It may not be the right approach for you, and I encourage you to find your own way through the challenges you face...but maybe, just maybe you'll find something of value from my story, and I may gain something from yours.
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