this past week i was at a presentation of robert naseef, a psychologist who specializes in care for families affected by autism. he has quite a unique perspective because he is also a dad of an autistic boy. they got the diagnosis in the eighties and since then have come a long way.
him being able to combine his professional self with the part of being a dad has resulted in him having tremendous insight into families and the individual roles of family members and how these shift, change, are being redefined after the autism diagnosis.
i am reading a few blogs about autism, among them flapiness is because of a personal experience 12 years ago that has never let me go.
back then i was 18 and working as an au pair. the boy in my first host family was (prior to my arrival) described as “having difficulties with learning” but never did the parents mention any diagnosis. when i arrived and saw M on my first morning stimming in front of the computer my first thought was “oh my god, it’s rain man”. now, i know how bad this sounds but you have to keep in mind that i was never told what was really going on with M and the only thing i could relate his behavior to was the movie. and did i mention that i was 18 and looking at 12 months of caring for a boy with a disorder i had no clue about?
my mom sent me a little book (which took 4 weeks to arrive…mail was slow and 9/11 didn’t exactly speed things up) and in the meantime i got to know M and his behavior. i really came to love him and i was so thankful for his therapist he saw once a week who included me in the sessions and explained some of the behavior and what i could do. it wasn’t perfect and it wasn’t (looking back) nearly enough and i made so many mistakes. but the parents were barely there. the mom was always around the girl (2 years younger than M) and would basically ignore M and the dad would have a very strict and structured approach to M’s tasks and behaviors. there was a lot of tension in the house, and a lot of cold. it was very emotionless. to this day i remember how strange i thought it was that the parents never held hands, never kissed (not even a peck on the cheek), that there was no love in that house – just an atmosphere of functioning.
i eventually ended up rematching because i never clicked with the host parents. i didn’t understand them and felt like they had no interest in me, despite me clearly stating in my application that i wanted to be with a family who was looking to include the au pair. i felt like i didn’t get what i thought i would and also working with M was tough – managable but tough. i remember one of my friends said that whenever she sat next to M she got nervous because he made her nervous. she didn’t know how to handle his stimming at all (whereas i was able to see beyond that). so i know i was patient and really tried with M but i ultimately rematched because of the parents.
now back to dr naseef and his talk. he made me realize what my host parents went through. they had a first born, a boy, a perfectly cute baby and two years later a girl, a perfect match. and suddenly all their hopes and dreams are taken away by a diagnosis of asd – autism spectrum disorder (they did know the diagnosis, just preferred not to share it with me until about a month into my stay, long after i knew what was going on). for many families the grief and anger and bitterness and disappointment over the diagnosis eventually changes into acceptance. at dr naseef’s talk i realized that my host parents were still stuck in the grieving stage. they were so affected by the diagnosis that their relationship was just a shell, their family life was just a shell. whenever i thought (or said to friends) that they are fake they were indeed just playing their “outside role” for no one really knew how they felt on the inside. and sadly enough they as a couple were not able to confide in each other. they fought their own battles, stuck in grief.
with dr naseefs words spinning in my head i feel very sorry for my host family. not because of asd but because they didn’t have the tools and/or the help to overcome the burden of the diagnosis and look ahead. the mom projected her hopes and aspirations onto the girl (who is now going to the same college mom went to and doing the same sports mom did – yeah, i googled…lol) whereas M stayed behind.
i feel sorry for thinking many bad thoughts and for the bad things i said about them without understanding what they are going through. if i had known i may have been able to make it work. but then again i think we still weren’t compatible but i may have pulled through for the kids’ sake.
now, they were mean to me. they told me i wasn’t welcome in their church anymore (which up until that point i had attended with them most sundays, i even attended choir practice sometimes), and i was cut out from any other family activities (not that there were many to begin with). i was communicated with via post-it notes and they made me pay for food they bought for me (eg they asked me if i wanted to put anything on the grocery list, i said apples would be nice, they’d take that off my 139$ weekly pay check).
while i still remember how all this meanness hurt me i now understand a little bit about the pain they were going through.
sometimes life comes full circle and it had to take 12 years for this circle to close.