‘Welcome to Holland’, (arriving at an Autism Spectrum Disorder Diagnosis)
Dani Netherclift
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)
Tagged: ASD journey, Autism, Boodi, family, love
Beautiful ….. Support for you and your family is close by amongst friends.xx
Thanks Kyla xx
my friend Pete , who Al has met and you too I think who just finished building his house in braidwood and is married to jen who just had their first child is little autisitic, Pete that is , with a fully disabled intellectually sister, never stopped him being a teacher , running his own catering co and getting married and building his own house , its a good house too , i can put you on to him on fb if you would like to friend him , love Clint and family
Thanks Clint x
Dani, I read this last night but due to technical logistics was unable to comment until now. My thoughts are with you as you sit with where are you now. All your feelings and fears. The big journey ahead. And I admire your mother heart that adores your boy so much. I love that you celebrate him. What a delightful human being he is. xxx
Thank you Deb. It has been a lot to take in this week. I think that I have to slow down with the research to avoid overload, stop for a second and let it seep in. I know that acceptance takes time to sink in. I want to thank you for the idea of telling Boodi that I love him as soon as I see him each day, such a beautiful thing. The last thing before he goes to sleep and the first thing when he wakes xxx
This is a really moving post and the welcome to holland open ing is an excellent way to make people understand. Good luck
Thanks for taking the time to read a rather long post, Lydia. It is good to have a tool box of words to help.
What an incredible story. Brave and honest. I love the piece around Holland. There are some great things about Holland and you have an amazing perspective on this
I was so happy to have found the Holland piece. Words make a difference.
I love that Welcome to Holland analogy, it’s perfect. I can’t imagine how frustrating it’s been having to deal with the professionals, especially ones who are just wasting your time. I hope the people you have to deal with from now on treat you and your gorgeous boy right xx
It is a wonderful analogy. It helps. I am sure that we will come across some more health professionals that are not a great match, but fingers crossed there will be more good than bad. The important thing is being able to advocate for your child I guess x
That sounds like such an emotionally draining and frustrating process for you. I’m so glad at the end of this piece that you finally found a health professional who was able to give you what you needed. Fingers crossed for your family that this is the start of a much easier road for you, in terms of accessing the services and early intervention. My youngest was born with a rare condition called microtia, and I could totally empathise with so much of this. The waiting lists and appointments with multiple health professionals. The assessments, the fear and the anxiety.
I so hope that this is the beginning of an easier road. We will see what it is like dealing with the NDIS which has rolled out here as one of the initial launch places – we may be the guinea pigs. It is such a frustrating and scary thing to try and get medical issues sorted out for your child, as you obviously know.
Such an honest and eloquent post. I love the Holland analogy- ASD is just that. It’s Holland, and it’s fine, even if you weren’t expecting it. I’m sure there is more to it and you will learn along the way- but I’m glad you’ve found a good doctor, too.
I think that Holland will be fine. Not at all what we were expecting, but we would not change Boodi for anything. We love him as is. My mum has always called him The Magic Boy, and he is :)
Oh, Dani. What a journey. It’s amazing what you had to go through with all those medical professions to finally find the one paediatrician to finally get you some help and advice.
And going to Holland rather Italy still means you’re going on a beautiful adventure. Much love to gorgeous Boodi x
Yup. It has been a journey, though I do get the feeling that the real journey has not even begun yet. It helps to have a great guide, finally.
Thank you x
What a brave post and I really do love the piece about Holland – that could have been our story in relation to having our children via a very long and roundabout flight to a place called adoption, with multiple IVF stop-overs along the way. Sorry that you have had such a frustrating roundabout of health professionals to deal with and glad you have a doctor you can trust and who is so frank with you. Good luck.
I’ve read the poem about Holland on my journey through this “spectrum”. Early intervention programs are wonderful these days, they provide much needed support. I wish I had been able to access it for my now 13 year old boy it may have made some difference. He has a diagnosis of “PDD_NOS” (google it). I’ve never told him of his diagnosis and I don’t think I ever will – I don’t want a label to define him. He is as he is. Its that simple. I accept him, so do his sister and brother. Many others don’t. That’s something that he will always struggle with. When I look at him now I see a contented young man, watching a movie like always or building some new weapon or fighter plane with Lego or drawing a new form of alien. He’s okay and so am I. I found the journey bumpy to say the least I hope yours is not so much but just in case hang on for the ride!
I have read a little about PDD_NOS along my research travels when I was trying to work out what was going on with Boodi, but Al and I both read a little more on it last night after you commented. I don’t truly understand why it’s not on the spectrum, but we have a lot yet to learn.
Labels are difficult, and it something that I continue to struggle with. In Boodi’s case it is very obvious that something is different about him, and he will know that too as he gets older, so I guess we would like to give the difference a name so better to explain the nature of the beast to him. We won’t let him be his diagnosis.
We are hanging on for the ride. Hope that yours continues in a somewhat smoother road than previous. Thanks for commenting x
It sounds as though you have had a long, difficult road in another direction. Life sometimes throws some interesting curveballs. I have read that there is some controversy about Welcome to Holland from some quarters, but I think that it is a handy analogy to get through these early days. Thank you for your wishes and your words.
darling Dani… our hearts go out to you… you have a very special way of expressing yourself… most poignant… your darling very special little boy is surrounded by love… good Luck in your journey to Holland… it is also a very special place….xxx Marion
Thank you lovely Marion. He is certainly surrounded by love xxx
Hi Dani
It was lovely to meet you and your husband Al and beautiful boy Perry. What we thought was going to be a terrible day yesterday at the hospital actually turned out to be not so bad at all. I came away from the hospital feeling like finally I have met someone who knows how I feel because they too are on a similar journey. I was googling books you had suggested to us yesterday and thought I would also have a look at your blog. I was very moved and I cried and cried because we too have had a similar experience and you describe so well all the feelings we go through as mothers to beautiful little boys with autism. We wish you all the best and we hope to one day catch up with you all.
Sarah and Scott.
Hi Sarah (and Scott), it was so lovely to meet the 2 of you and little Max too, and we felt the same about the hospital experience. We had a chat to Caroline too. It really was such a relief to us too, to talk to you guys. I dropped into Gateways this morning and booked into the talk tomorrow, so hopefully I will see you there, but if not, we would love to catch up soon. I will send you an email to the address that you posted from here and give you my mobile number, and the link of a really lovely article that I read last night that made me cry (in a good way).
Dani x
Catching up on your story. You tell it beautifully. What a wonderful mother you are! You story about wanting to go to Italy but arriving in Holland is so apt for so many situations and such a poignant reminder. I’m going to share that one with my husband! Thank you for being so frank and honest.
Thank you Nadia. Welcome to Holland isn’t my story, but was written by a mother of a child born with Down Syndrome, but it relates well to adjusting your expectations and the way that you look at things when you have a child with a disability.
I m the parent of an 18-y-o quadriplegic beautiful smart daughter with CP. Welcome to Holland was the first thing ever to ease the pain. I love the essay.