Dual Diagnosis Dilemma

I am acutely aware that I don’t talk much about Gilbert’s albinism on the blog. It’s not because I think it doesn’t merit more attention – it does, it deserves much more focus than it currently receives here.

But it’s hard to dedicate equal time to his separate albinism and autism diagnoses when it seems the needs of one are consistently more demanding than the other.

It’s the dilemma of the dual diagnosis. How can you equally deal with the needs of different, complex and sometimes opposite diagnoses?

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Gilbert’s life has, to this point, been separated into 2 halves. The first 4 years was all about his albinism. We concentrated first and foremost on his visual needs and undertook intensive early intervention to expose him to the sensory experiences he tended to avoid due to his vision impairment. He also went on to attend preschool at RIDBC Hunter where his visual needs were met first and foremost.

We helped him get used to his first pair of glasses at 11 months of age, although it took over a year to get him to keep them on for more than the briefest time. We concentrated on his skin, experimenting with sunscreens to protect his delicate skin from the sun and training him to keep on a hat and wear long-sleeved shirts all year round.

Since he received his autism diagnosis we have spent the last 4 years dealing with all that an ASD diagnosis entails. We have attended countless occupational therapy and speech therapy appointments to address his sensory needs and to help with his initial speech problems. We have also seen counsellors and psychologists in a bid to help him better cope with stressful situations and manage the triggers for troubling behaviour.

We made the tough decision to take him out of preschool at RIDBC and instead enrol him in an autism specific class at ASPECT Hunter so we could get him ready for school. This year, after 3 years at ASPECT, he finally made the leap to a mainstream classroom and we couldn’t be more proud at how well he has handled this challenge.

Looking back it was an extremely difficult decision to change the focus of our early intervention 4 years ago. On one hand we knew that we needed to focus on his autism before starting school. Yet on the other hand we also recognised that we could not continue with the same level of assistance for his vision impairment. It honestly felt like Solomon’s choice, where no outcome was going to be a good one.

So in the intervening years we have done what we can with what we’ve had. We have never completely ignored his vision needs – he still sees an opthalmologist regularly and we are clients of Vision Australia, who have helped us so much. But we have never been able to completely focus on his visual needs since his autism diagnosis which has troubled us deeply.

This year he has received itinerant vision support at school and we found ourselves, for the first time, in a position to deal with both diagnoses at once in a single education environment. Up until now, it seemed as if we always had to make a choice, one way or the other. But now things are slowly, but surely, falling into place.

This term we will be undertaking more assessments to see where his vision is right now. We’ll be assessing his readiness for using adaptive technology in the classroom as he is struggling with the strain of trying to read and write the traditional way. We’ll also commence visual scanning training to improve his mobility and coordination in unfamiliar environments.

He’s also going to start in a small social skills group with other boys of similar age. Of all we are beginning this term, this is going to be the real test for him as he is not comfortable in group settings. But I think our willingness to give it a shot shows how far he has come this year and our growing confidence in his ability to cope and adapt and progress.

This term is going to be a big one in many ways as we inexorably march to the end of the year and start preparing for next year. It’s going to be tough but I think we are finally getting on the right track. For the first time I think we’re close to getting the balance between the two diagnoses right.

I sure hope we are, anyway…

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8 Responses

  1. Oh Kirsty I had never considered how difficult this must be for you! One of those diagnoses seems hard enough, but to have two, it’s a wonder you are as calm as you come across.
    Hope this next term goes all for you. Xx

    • Kirsty says:

      I usually try to not think about it too much myself or you’d go absolutely mad with guilt and worry all the time. But as long as we do all we can to help him out that’s all that matters. Thanks for your kind words Jess, it’s good to know my “keep calm and keep smiling” plan is working!

  2. Hi Kirsty. Meeting you for the first time via FYBF. Wow. Your juggling act is quite a bit more significant than the one I was musing about on my blog. You sound very together and prepared and seem to have such a positive outlook. That will no doubt hold you in good stead. I hope this term goes well.
    Leanne @ Deep Fried Fruit

    • Kirsty says:

      Thanks Leanne, I need all the luck and help and good vibes that I can get! But whatever the outcome, at least I know we’ve done all we can to get the best result for our son – fingers crossed for the rest of the term and beyond…

  3. Kirrily says:

    Goodness, Kirsty, a very busy end to the year for you! But I am so pleased for you (and for your Gilbert) that he is settling in to something there that sounds positive and right for him. It’s a hard decision to take a child out of one place to put them into another – even harder to trust that gut instinct when you have a dual diagnosis to consider, I imagine.
    Kirrily recently posted..October is pregnancy and infant loss awareness month

    • Kirsty says:

      Thanks Kirrily. It is going to be a big end to the year but it will be worth it if we can set him up as best we can for next year. I’ve had to learn over the years to trust my gut, still not an easy thing to do as I am a creature of logic but it hasn’t steered me too far wrong yet!

  4. My brother was hit with a double diagnosis about 10 years ago, Klinefelter’s Syndrome (often called XXY Syndrome) and Aspergers. It’s been tough for my brother and my Mum as they have the genetic issues as well as the behavioural issues to deal with, and some of the issues for each diagnosis are in direct contrast to each other. It also hasn’t helped that the diagnosis didn’t come until my brother was 14, and while there is a lot of support and early intervention for young children diagnosed with autism, there is most definitely a lack for those who are diagnosed much older. The high school he went to were absolutely useless, and now that he’s an adult (almost 24) there is a real struggle helping him find a workplace that understands his needs and is prepared to accommodate/assist with those needs. Finding disability services people who actually do their job and fight for him when things go wrong (which they do a lot!) is almost impossible. Part of the problem is the fact that his “disability” is an invisible one, and so it’s hard for a lot of people to understand that his brain works differently to others and it’s not just a case of him being able to “get over it” or “grow up” or whatever.

    In terms of the double diagnosis, there are the physical issues to deal with (low testosterone & hormone imbalances, infertility to name a few) as well as the issues of Klinefelter’s resulting in below average intelligence and how that affects the autism. There’s also the added issue of great emotional instability and depression thanks to the rather severe bullying he has had to endure because of his quirks. Young adult autism, particularly for those who are high-functioning is sorely lacking and the ignorance and intolerance around it is staggering. I know my Mum despairs for my brother some days and everything he goes through and I can only hope that one day there will be services available that will actually help him rather than write him off or just pay lip service.

  1. December 30, 2012

    […] castle and we celebrated her birthday at home for the first time. I also pondered Gilbert’s dual diagnosis dilemma and took some time to really consider what he […]

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