Tuesday, February 25, 2014

Non WoW: The shock of diagnosing Autism Spectrum Disorder

This is totally non wow related, but I have the urge to let out the bevy of emotions that have run through me this past few months. I have two lovely children, and like most children seem to be, despite being brought up the same, they are the complete opposite of one another.  The only thing they did similarly was walk at the age of one.

My eldest, a girl, was a reserved child, and didn't show much affection until she was about age four.  She was very shy, but very intelligent, and could sing the Australian National Anthem by the age of two.  She loved to learn numbers and the alphabet.

My son, on the other hand, was affectionate from an early age.  He was a slow talker, in fact, around the age of three when he still wasn't putting three words together, I decided to take him to speech therapy.  He hated books, and would run screaming when I pulled one out.

My daughter loves vegetables, and says she doesn't like eating meat, because she has to chew it a lot and "it hurts my teeth".  My son, picks out all his vegetables and loves to eat meat.  My daughter loves to sleep in; my son loves to get up at the crack of dawn.  My daughter can't help but look, even if it's scary; my son runs from the room and peeks out from behind the wall, or covers his ears and squeezes his eyes shut.  Kids! Such funny little things!

But this story is about my son.

As I watched him growing up, and not quite reaching the same level as his sister in terms of speech and comprehension, I had a lot of people telling me things like:
"Oh, he's a boy, boys are always slower when it comes to speech."
"His sister is talking for him, that's why he's not talking."
"My son did that, but after three he really picked up."

So I thought I would wait.  One of the girls at work had a son a few months younger than mine, and when he was two, she told me she was taking her son to speech therapy.  I asked her why.  She said that he only could say 50 words and he wasn't very intelligible.  I thought to myself, "Gee, my son can only say 25 words," and I thought it was a bit early so I thought I'd just let it be and keep trying at home to get him to say more.

My parents said that it was environmental.  I wasn't spending enough time teaching my son, I was too busy at work, and because they had spent more time looking after my daughter at an early age, that was the reason why he was so behind compared to her, as they spent a lot of time teaching her (my parents are both teachers).  I had some guilt that I wasn't nurturing my son's intellectual needs, compared to my daughter, though I wasn't sure if there was much more that I could do.

It wasn't until we went to a party at a friend's house after he turned three, that one of my friends said that she was really concerned about him.  Her son was younger, but he was so much more advanced than my son in terms of speech and comprehension, that she sent me an email encouraging me to do some interventions because she had a friend who had similar issues to my son and they left it a bit late.

Around that time I had a spate of children who were having grommets put in their ears for hearing difficulties and "language delay" and EVERY single one of those children, younger than my son, were more advanced than he was.  If these kids were delayed, then why wasn't I doing something about my own child?

I didn't want to be a paranoid parent. Worse, I didn't want to be a paranoid DOCTOR parent.  Both my husband and I are doctors, many of our friends are doctors, and every medical professional has their own opinion about how we should bring up a child.

Even my husband didn't think there was anything wrong with my son.  He would grow out of it, and catch up to the rest of the kids, he said.  My son was intelligent - he can make breakfast for himself, use the Nespresso to make coffee for dad in the morning, and follow routines.  He was a stickler for routine though, and disrupting his routine would make him very upset.  Perhaps, that was an early warning sign.

And so, early last year I took him to speech therapy.  After a year of speech therapy, he improved a fair bit, but he was nowhere near any of his peers.  At age four, I still couldn't have a conversation with my son - I could only ask him simple questions with a yes/no answer. I mean, he knew his name, because he would come when called and if I pointed to a picture of him he would say his name, but if I asked him what his name was, he couldn't tell me.  Just a few months before he turned four, he only just grasped the concept of colour.  It was like a light had switched on.

The subject of autism was broached my speech therapist mid last year, and I took him for further testing.  I had already checked his hearing formally (which was perfect), but I sent him for some visual tests, which he passed with flying colours. I kept batting on with his speech, doing our homework at home, and worrying to myself about how he was going to go to school if he couldn't answer his name or understand instructions.

One of the Otolaryngologists (Ear, Nose and throat surgeons) that I work with regularly has three sons, one of which has been diagnosed with autism.  I had talked to him a lot about my son, and he recommended that I speak to one of the developmental paediatricians at our institution.  Interestingly, the surgeon's brother, was the head of paediatrics at that same institution, but he was not a great believer in the diagnosis of autism, which I found amusing.  After all, the two brothers had a lot of autistic traits themselves, and they both became doctors.

And so this year rolled around. Next year my son is supposed to be going to kindergarten, and I was very anxious about how he would cope at school. His speech therapist again broached the subject of autism and so I agreed to have formal testing done.  I had already resigned myself to the fact that he had autism spectrum disorder of some sort, and was trying to figure out how best to help him.  However, so many people poo-poo'd that idea, saying that he was very social and interactive, and autistic children are withdrawn.  It would be expensive - about $650 for a few hours of testing in the presence of a speech pathologist, occupational therapist and a psychologist.  Fortunately, my son seemed to cope ok with that, since he was familiar with the speech path already and I waited a few weeks for the results.

In the mean time, I went to chat to the developmental paediatrician and she gave me a good article to read from the Lancet September 26, 2013, titled "Autism".  This table about the behavioural characteristics of autism caught my eye.


My son had a number of these characteristics, but not all of them.  Hell, people I know now have some of these characteristics!  The paediatrician listened to me describe my son and she agreed he had some marked delay, and she would be interested in seeing the report when it was done.  I pored over the article, and resigned myself to the fact my son was probably in the autistic spectrum somewhere.  The article talked about diagnosing early, and early intervention - earlier than when I had started doing something, and I felt that twinge of guilt again.  But I was the only one who wanted to do anything about it, so if I had left it any longer, it would have been worse off, I thought to myself.

So today, they wanted to discuss the results of the assessment with me.  The director of the team sat me down in her office and started tell me how hard it was to say this, but based on their review, my son had mild-moderate autism.  The psychologist had visited him at daycare, and the carers there had noted that my son would often play by himself, not answer to his name, and need to be called multiple times.  He would often not be interested in group activity or story time, and sit with his back facing the group.  The occupational therapist had said that his fine motor coordination was also poor (but his gross motor was ok) which didn't surprise me as I rarely saw him hold a pencil and draw anything more than line or two.  In terms of speech and comprehension, he functioned at the level of a two and a half year old.  None of this surprised me.  I already knew he was talking like a two year old, and it was a little bit of a relief that there was a diagnosis of some sort made, because now I felt I could focus on how to manage him, how to help him to function normally.  Did this diagnosis mean I had to send him to a special school?
In Australia, if you have the diagnosis of autism made by a professional body, then you are able to access a vast variety of resources.  There is a government allowance every year till the child turns six that can be used for their therapy and teaching, and I also entitled to a carer's allowance, none of which is means tested.  Not that I needed the money, mind you, but it does help a lot with the extra things I needed for my son.  Now he has to attend occupational therapy, and also social skills classes and I was more worried how I was going to fill out the paperwork with this diagnosis, than I was with the diagnosis itself.  The director was concerned because she thought I would be in one of the earlier stages of grief (Denial, Anger, Bargaining, Depression, Acceptance) rather than in the acceptance stage.  I told her that being medical, it was something I had been expecting and I just want to focus on helping him as much as I can.

I told a few people about the diagnosis, and the responses were varied:
"Well, I always thought there was something a little bit funny about him, that will explain why he doesn't listen."
"Oh, what does that mean, will he be autistic for the rest of his life?"
"Maybe he'll get cured later, and everything will be ok."
"Is it hereditary?  He didn't get that from our side of the family, surely..." (!!!)
"I know two people at work with kids with autism, and they are doing really well with interventions."

It wans't until after raid tonight that I went backwards a little and got a little bit teary about the diagnosis. My son is a happy child, though a naughty one at times, full of cuddles, kisses and excitement about things such as planes, garbage trucks and cranes. I worried that when he got to school, because he couldn't understand what the other children said, that they would make fun of him, and he would hate school and then start to act up and then not learn at all.  My son would go from my sweet child to a problem one, and I wanted to avoid that at all costs.  Is that not what every parent wants for their child?

It's a year till he goes to school, though enrolments will probably start around May for placements in 2015. My head is buzzing about whether I need to talk to my daughter's school principal to see if it's appropriate for my son to go there, or whether he has to go to special school of some sort.  My husband wants him held back a year, but I would rather he went to school so he could get as much help as possible. Every day since I've thought he might have autism, I have been trying to make everything he does a learning opportunity. Look at those cars, what colours are they?  Using flash cards in the car for ABC.  Trying to get him to understand the concept of boy/girl by using everyone he knows as examples.  But it's not all learning, I do let him play games as well.  He plays a lot of computer games, and Reading Eggs is a great source of games for him (when I hide the iPad from him so he can't get to Temple Run, Bad Piggies, or this new Mickey Mouse game my husband downloaded).  I've found that with books, he likes books about movies he likes to watch, like Peppa pig, Tinkerbell, Toy Story, so that's a start.  I use his love of cars to do counting and colours (because we seem to have a hell of a lot of matchbox cars).  And in the last few weeks, he has been able to answer me (even though it's probably a parroted learned response) when I say "What's your name?" and he replies "My name is Nicholas*."  Each step is small, and hard earned, and I don't know what our future will bring, and I am sure there will be more tears to come as I struggle with his learning at a school level, but for now I don't ever want to forget my son as he is now - the one who thinks there is nothing wrong with his world, and that everyone around him loves him for what he is, and he is none the wiser.

*name changed

31 comments:

  1. I know you'll keep him safe and I think it's great that you went ahead with testing instead of just hoping it would all work out which is something I'm frequently guilty of.

    ReplyDelete
    Replies
    1. Thanks for encouraging me to write about it, I do feel a bit better now I let it out a bit. I don't know about it helping anyone else though - but maybe any other parent out there who struggles with similar things to me, might be able to go and seek the help in the right places after reading this.

      Delete
  2. Oh Navi. I think your son is very lucky to have such a loving mom and I know that you will do everything you can to help him grow and learn. Thank you for sharing this. Much love is being sent your way. <3

    ReplyDelete
    Replies
    1. Thanks Lyss! I am doing all I can, and I wonder if it's enough, but I am trying as hard as I can (which is all I can do, really!)

      Delete
  3. I will send you an email later but suffice it to say you are a wonderful mother: stay strong and know I am sending you all my love and strength

    ReplyDelete
    Replies
    1. Thank you for that! And your email was lovely - wow that would have made a longass comment! <3

      Delete
  4. I'm so proud of you for going ahead and finding a diagnosis when everyone one was not. In reference to your last sentence, have you taken many videos with him? I still remember his cheeky smile the last time you came to visit me.

    ReplyDelete
    Replies
    1. I have taken a few videos with him - and he does love taking pictures (you would be proud, he likes taking pictures of FOOD) with my phone - so I have plenty of memories of him at this happy cute age. Thanks Cym <3

      Delete
  5. Oh, my. I'm glad you finally got a proper diagnosis and can get some additional help and care -- though it sounds like you are doing a pretty great job already (ditto, ditto what koalabear said). Best of luck to you for now and all the years to come.

    ReplyDelete
    Replies
    1. The guilt part is always there Kam, and I know I shouldn't feel guilty but it's so hard! Maybe I shouldn't have done this whilst I was pregnant, maybe I should have sang him more nursery rhymes, maybe I should have started investigating when he was two... but I know that in the end it doesn't matter because i am doing something now, right? Thanks for the well wishes <3

      Delete
  6. Good for you Nav, and by that I mean well done for having the courage to walk into the dark and find the way out. This is a long and fabulous journey for you all, and I KNOW your son has the best mother in the world to help him. *Hugs* to you all :D

    ReplyDelete
    Replies
    1. Thank you Godmother, from one mother to another :D When my son grows up, we may look on all this one day and wonder what all the fuss was about - I can only hope!

      Delete
  7. Hey Navi, Corael has Asperger's Syndrome and he was only diagnosed when he got to high school. It was a hard slog for missus Ayelena and me until that diagnosis as he was always in trouble at primary school and had a number of suspensions. But after the diagnosis, it seemed his life and ours turned that much needed corner. The school is able to get extra assistance, which covers the learning of social interaction skills and such. I recommend you speak with the school as soon as possible, as they should be able to get the same sort of assistance in for your son. Corael is now 20 and still having issues on the job front, but we are supportive and I constantly try to help him. I know you'll do well and having the diagnosis so early, will only benefit you all, as you now have a direction.

    Ayelena

    ReplyDelete
    Replies
    1. I spoke to the principal later in the day and he was very supportive and said that we should do our best to fit him into mainstream school. My son is mild compared to some of the other children there, and he was more concerned about behavioural abnormalities which could be dangerous, or running away (which my son does not do, really). Corael has great parents in you and Mrs Ayelena and I often look at what you guys have done and hope I can do the same.

      Delete
  8. My nephew is in a similar place although a few years further down the line and according to my sister-in-law, the hardest aspect so far was admitting that something was wrong and getting the tests run. I have no doubt that you'll do a brilliant job.

    ReplyDelete
    Replies
    1. I can only try! Wanting to stick a label on him was hard, but it has given us direction and a pathway, which is a good thing. Thanks Erinys <3

      Delete
  9. You're doing good for your son. You realized that he wasn't progressing as expected and have gone though the steps to help him. I remember that my brother was about three when he was diagnosed as autistic. He just didn't speak at all. I'm certain that you will do everything within your power to make sure your son has the assistance he needs to succeed at anything he wants to do.

    ReplyDelete
    Replies
    1. Thanks Tyle <3 I will probably ask you about your brother more when I see you online (when you're in hearthstone since I hardly see you in game lately)

      Delete
  10. Admitting things aren't normal is a hard thing to do. My brother is bipolar, and was diagnosed very young. Things were pretty bad until my parents found the help he needed. and support.

    ReplyDelete
    Replies
    1. Thanks Doc! It is a such a relief to find an answer, though sometimes the answer isn't what we want to hear. People think it's some kind of disease with a cure, rather than a lifelong condition which just needs coping strategies - but I think you and I know better than that.

      Delete
  11. Hey Navie. Really sorry to hear of the struggles you are facing and will continue to face. I think the most important thing here to remember is not to doubt yourself. The fact that you're getting all this help for him and putting so much energy into each and every day proves you are an amazing parent, and your son is very lucky to have you. Chin up! I have 2 children with ADD, I know how frustrating and emotional it can get. Make sure to stop and breathe. Surround yourself with a support network to have time off/away, or just to talk. Lots of luck! My prayers are with you! :D <3

    ReplyDelete
    Replies
    1. Thanks Anou! Gosh you have two and I am complaining about my one - hats off to you! I will take your advice and just breathe every now and then - because the other fear I have is that I get all wrapped up in it and become resentful of trying to be the perfect parent when I'm not.

      Delete
  12. I can't say a lot about this, as I've not had the experience. I do know (cliche incoming) that every child is different - regardless of any underlying condition. I've known children both with problems and not, who are difficult to manage and others who are loving and friendly. As long as you have the help and support you all need, I'm sure he will be fine. *much hugs*

    ReplyDelete
    Replies
    1. Thank you Sprowt! Your kind words make me feel better about sharing /big hugs back.

      Delete
  13. Big hugs Navi to you and your family. Finding help early is always a good thing and it sounds like you're doing an amazing job already. I'm sure there are plenty of people out there that wouldn't be taking the trouble you are. It sounds like your son is a beautiful little boy and incredibly lucky to have a mum like you xx

    ReplyDelete
    Replies
    1. I think i sound more amazing in this post than I feel, and my little boy is beautiful at times - lol sometimes I think only a parent can see it! Big hugs back to you my friend, and thank you!

      Delete
  14. After reading this Navi, all I can say is your son is so incredibly lucky to have such an amazing mom. I wish all of you the best, and know that I'm throwing some ginormous virtual hugs your way. <3 <3

    ReplyDelete
    Replies
    1. Thanks euphy! I'll take all the hugs I can get :D

      Delete
  15. Hi Navi /waves. I agree with everyone else that you sound like you're doing an awesome job & are clearly a fab Mum! I have a similar 'story' to Ayelena - a family friend was diagnosed with Aspergers at 14/15 but the diagnosis and adjustment combined with puberty made for a rather tricky time for the family. Yes it explained a lot of his behaviour but it wasn't easy and the school didn't really have time to adjust their teaching before he left. So I think it's really wise to get the diagnosis early and that way the school can tailor their style for your sons benefit.

    ReplyDelete
    Replies
    1. I'm glad he got an early diagnosis. People say it's like every 2nd person has autism these days, but if it helps my son then I'm happy to take the diagnosis and all the therapy that comes with it. I wonder what he will think when he looks back at all this fuss one day!

      Delete
  16. No matter how much you "knew" what the results would be, hearing someone else say it is hard. I know you will do whatever it takes to find a way to help your son improve and grow. Good luck to you & your family! /hugs!!!

    ReplyDelete