I crave information about autism. I am parent of a child with autism and I work closely with individuals and families living with this complex disorder.
I read a lot. I listen to parents. I seek to understand those who are diagnosed. My cup is not full. I am still learning.
There are so many different opinions, viewpoints, experiences, and perspectives that I must often remind myself that perception is reality. No two people with autism look alike. Nor do their experiences. So if I want to continue to learn and evolve, I need to keep an open mind so I can absorb the many facets of how autism affects us all.
When I read this blog by Carrie Cariello, titled I Know What Causes Autism, I smiled. This is a refreshing and honest take from a parent raising a child with autism. It’s funny, poignant, and frank. I often see parents shrink away from revealing how hard it is to raise a child with autism because we are told autism should be accepted, tolerated, celebrated. And I truly hope it is, for my son’s sake and for the good of humanity. People with autism are valuable and precious human beings. But when you witness your child banging his head on the hard floor because he does not have the ability to communicate, bruise a peer, bolt into traffic, scream in terror at the unknown, or kick your head while you are driving, well, this puts you in a tough place. I love my child dearly but sometimes I don’t like autism so much.
When you have a child with autism, unconditional love comes just as natural. You love him just the way he is. But this does not mean you can’t ache and grieve when life is hard for him because of autism.
This is a difficult quandary for many parents and a hard message to eloquently convey. Kudos to Ms. Carillo for doing just that.
Katrina Davis is a family advocate at Seattle Children’s Autism Center and mother to Arthur, her 15-year-old beautifully complex boy with autism.
Hi Katrina,
Thanks so much for your post and for sharing the post from Carrie. Both of your posts just touched my aching heart. It always hits that little tender spot in my heart, underneath the tough armor that we parents all have, when I read such authentic and eloquent expressions about our lives. Thank you. I appreciate this so much.
Take care,
Kim
well spoken! nice pic of you with handsome Arthur, Yes, with those behavior , all I have experienced with my son, i do not like autism so much,
Diane
I have written this story several times in these little spots…trying to connect…trying to find…something…to help…making progress…my heart aches for all you young parents dealing with the sadness associated with being told your child “is on the Autism Spectrum”…15 years ago, all I knew of Autism was what I experienced by volunteering in an elementary school Library…and the little boy that would be sent in to the Library quite frequently because he couldn’t ‘behave’ in class…”he has autism” I was told…without knowledge of ‘autism’, well, he and I just made the best of a sad situation…at least he was out of the environment that caused him so much anxiety and all I had to do was care for him as lovingly as I could…. fast-forward 15 years: and I find myself in year 2 of gaining the knowledge that my 64 year old sister (yes, 64!!) is on the Autism Spectrum…we always knew there was “something” different about her…something that just didn’t make sense…so capable one moment…so frustrated and filled with anxiety the next…and so, in these past 2 years we have entered the world of “mental health”, “behavioral therapy”,”entering into her world”, “finding the missing piece”…the phrases are endless…my 64 year old sister grew up in a world that was “pre-autism awareness”…and so she was ‘cushioned’ ‘bubbled’ ‘protected’ …but, sadly, not prepared to deal with the outside world… she functions on her own quite well…no one bumps into her if she is alone in her house…no one makes mistakes which cause angry outbursts…sounds fine…except that it also means, she must live alone…with visitors and telephone calls…but still its a lonely life… she and i went out again today… its about the 3rd or 4th time in a row that we have gone out together without incident…this means that as I learn more about ‘who’ she is… and ‘what’ her needs are…and ‘how’ to keep a ‘cushion’ of comfort to protect her in place, the more peaceful are her outings. Without knowing what came in the previous 64 years, anyone reading this would wonder…why wasn’t something done earlier… earlier: we were treading on dangerous ground around her…because: her anxiety levels were so extremely high from so many years of “not being understood”…she could function in so many normal ways, that we expected her to be able to do more than she could…she could get dressed…she could walk into a grocery store…she could pick out items needed…so why did she violently curse out the poor stranger who bumped her shopping cart…”we” didn’t understand how she processes everything… “we” didn’t understand “sensory overload”…”we” didn’t understand that when the stranger bumped her, what we saw as a light touch, she was actually feeling as though she’d been pushed across the room in a very rough, agressive manner…as I have come to learn about “processing” and “sensory overload”…and I apply these concepts to our outings…and she has been helped by her Psychologist and myself to learn that she IS NOT the only person on the planet…and that all these other individuals also feel and need to be treated respectfully, she is making an attempt to “accept” them and all their shortcomings. We have a long way to go…she cannot work with other people (employment) because of the extreme anxiety which has developed over the years…but, she functions as best as she can, her neighbors do their best to look out for her as she walks along the neighborhood, and I am trying to help the rest of the family and acquaintances understand her place on the autism spectrum…as many of them have absolutely no knowledge of what autism means…let alone accept that she has this ‘condition’…and so, to all you young families with young children “on the Spectrum” … may God Bless you with unconditional love and courage and strength and peace and joy in your child/children…that they may grow up knowing your love and learning as much as each one is capable of learning. I have read so many of your stories…I see my sister in so many of them…our parents did what they knew was best at the time…they simply loved their little girl and protected her…they could not know that their other children were being left behind and feeling lost because they couldn’t understand why this one could “get away with everything” while the others were always pushed aside…we are all old now…God is Good and I am so thankful for all I have learned to help my Sister…I pray constantly for our 2 brothers who have suffered greatly from all this…and I pray for you families…that if you should see your family in this story somewhere, perhaps some help will be provided…In HIs Peace. Amen.