‘Welcome to Holland’, (arriving at an Autism Spectrum Disorder Diagnosis)
Posted on January 21, 2015
‘When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.’
c1987 by Emily Perl Kingsley. All rights reserved
Early May of last year, five weeks before our baby girl was due, I took Boodi* to his 2 year old Child Health Nurse appointment. I noted some concerns with his language as well as some developmental issues, and the nurse suggested bringing him in for a test two weeks later. We went back in to do the test, though I had concerns about how Boodi was supposed to perform it without language or pointing. He “failed” the test. The nurse suggested I could wait a couple of months, or go to my GP to follow it up, or apply to the NDIS for further testing. For those blissfully unaware people out there, the NDIS is the National Disability Insurance Scheme. She handed 37 weeks pregnant me a brochure, and offered to help me with the paperwork. She said “No-one wants Boodi to be the weird little kid at school with no friends.”
Bundling my little boy into the pram, I stumbled out of there and walked to the supermarket with tears streaming down my face. The two notions did not compute: Disabled = Boodi? I cried quietly down every aisle of Woolies..
Later, at home, I cried to my husband and my mother and talked about how off the mark the nurse was. We prepared for the birth of the baby. Boodi had his second birthday, and 10 days later my waters broke. Unknowingly, I breastfed him that night for the last time and in the morning Al and I went to hospital to have Lady*.
When we came home from hospital, Boodi ignored Lady as much as was possible. With her broken bones and wounds, I was over-protective, and instinctively wouldn’t let her brother near her, not that he was interested. A few weeks later Al’s mum came to stay for a holiday to see the babies. It was while she was here that it became apparent to me how intrinsically I accommodated Boodi’s quirks and triggers in our day-to-day lives to avoid the frequent melt downs that he experienced when things didn’t go to his plan.
After his mum left, I spoke to Al about there being an issue. I wrote a list of concerns to take to the GP. It was pretty long. Sitting in the waiting room at the doctors surgery, we smiled at the sweet, funny things our little boy was doing, and I clearly remember thinking….
We have over-reacted. The Maternal Child Health Nurse is wrong. We will be laughed out of the doctor’s office. There is nothing wrong.
The doctor didn’t laugh us out of his office. Far from it. He stated that there was “Definitely a deviation.” His developmental delays were of concern. A plan was made, wherein we were to get Boodi’s eyes, ears, speech tested.
Off we went to get his eyes tested by a lovely Irish optometrist. He kept saying that there was “No problem here at all. He has perfect eyesight!” as though it was a mantra that we could hold close as a talisman against what were searching for.
Next was the audiologist. Everything private or we would have to wait too long (I almost laughed today, the public arm of audiology called to tell me they had a cancellation and could fit Boodi in this Friday- I called to get him on the waiting list last May). Boodi’s hearing was fine too.
The speech pathologist that the GP referred us to had a very long waiting list, so I pulled out the list of local speech pathologists that the MCH nurse had given me. I made my way through about ten names and numbers, leaving messages each time. Only one ever even returned my call, so we took Boodi to see her. The speech pathologist was a nice lady, but unhelpful. She said that he didn’t have a pathology issue delaying speech, and he may or may not be autistic, but did we really want to go down the road of diagnosis?
“They diagnose them earlier and earlier. It won’t make a difference to the child that he is.”
Back to the GP to check in. He referred us to a paediatric psychologist and a paediatrician. I got home and called to get pre-recorded phone messages for both, saying they weren’t taking new patients. I called the doctors surgery to discover that the GP was on annual leave for two weeks and had to wait that long to get an appointment just to get new referrals. When I got in to see him, he had to refer to a paediatric psychologist that he didn’t know anything about, she was just next on the list. He faxed through a referral for another paediatrician directly, saying there would be a waiting list. We felt as though we were getting nowhere, probably because we were very much standing still. I wanted to go to Melbourne but our GP asked us to wait. He wanted us to see the paediatric pyschologist just to tick one final box to present to the far off figure of the paediatrician.
We got in to see the pyschologist quickly and turned up on a Thursday morning to see her. She asked to talk to the main carer- me- and then called Boodi in. After five minutes of him totally ignoring her attempts to engage him, she had already deduced that he was autistic, and yet she had us (mostly just me) come in for another two expensive sessions wherein she rambled, drifted constantly off topic, related lengthy personal anecdotes about her own autistic children, and school funding information (our son is 2) as well as out-dated, disproven theories (which I discovered to be outdated with five minutes of googling). She gave me long checklists. When we talked about getting Boodi assessed for ASD (Autism Spectrum Disorder), she was vague about the cost until I pressed her, wherein she said that it would take 13 billing hours but really take her at least 30 hours, but she couldn’t charge the full amount of time that it took her. This meant over $2000, none of which would be covered by medicare. She also kept stressing that paediatricians couldn’t be bothered putting in the hours for an ASD assessment and we shouldn’t even bother with the appointment that we had.
After the first two sessions with her, I had grave misgivings. Al thought that I was being defensive, so I asked him to attend the third session with me, at the end of which he agreed with me that she was not the person that we wanted to be dealing with our child. We decided to wait the 10 days until we finally had our appointment with the paediatrician and see if he would assess Boodi, or I would call the Victorian Autism group AMAZE and ask their advice.
And then we met the paediatrician.
Glory hallelujah. We felt an instant rapport with this kind, funny, utterly knowledgable man, and we poured out our concerns about the people we had been dealing with, and our fears for Boodi, and all of his many quirks.
Then he did something simply extraordinary. He told us that Boodi was 100% definitely autistic, and that there was no need to perform a multiple disiplinary assessment because there was no room for doubt, and by writing it on a letter, the diagnosis would come into being.
This was the holy grail to me. It was what I had longed for for months, to have someone say “this is what is wrong, and this is what we will do.”
So, our darling little boy has autism. This is no surprise to us. He is his same, sweet, funny self. Still speaking in a language all his own, punctuated by numbers and exclamations of “Oh dear!” in a sing song voice. He has been bouncing gleefully on his new trampoline, blissfully unaware that he is autistic. He is just him.
There are plenty of stories to tell about how we feel, and our fears, but for now we are operating on the Welcome to Holland analogy. Boodi is our lovely boy, who we adore, and we will take things as they come, day by day. Things make more sense here, though we have little idea of what is ahead, which the paediatrician described as the merry-go-round before the roller coaster.
This is where we are.
This is a good website to read specifically what Autism or ASD is, if you’re interested.
*For clarification on the names Boodi and Lady, please refer to this post (they are Nom-de-plumes)