Why we’re seeking an autism reassessment for our daughter

Autism is a lifelong, pervasive, developmental disorder.

Why then, do people sometimes seek a reassessment of the diagnosis? It’s not like the diagnosis is going to change over time, is it?

Well, there are some cases where you may wish (or need) to seek an autism reassessment.

It could be because you are looking for a second opinion or a previous assessment has been inconclusive.

It could be due to a move to a new state or country, which requires updated local confirmation of a diagnosis.

It could also be to comply with changing funding or education requirements.

We are currently seeking an autism reassessment for Matilda, who was first diagnosed with Aspergers, as a 6-year-old, in 2011.

Five years on, we would like to understand where she sits on the spectrum now and how we can best help her as she prepares for the end of primary school next year.

In our case, there are a few reasons why we are seeking a reassessment for our daughter.

Why we're seeking an autism reassessment for our daughter - www.myhometruths.com

  1. Her original Aspergers diagnosis was made in 2011, under the previous DSM IV. All diagnoses made under the previous DSM are still considered to be valid so we don’t need to head out and seek a reassessment. However, we have personally found it harder to get help without being able to link her diagnosis to one of the new autism levels under the DSM V. Hence the need for reassessment.
  2. We are struggling to get a clear picture of Matilda’s academic potential. In her school reports she is not meeting stage levels for literacy and maths, however during standardised testing she has performed above average. Reassessment of her diagnosis gives us the chance to revisit her IQ and achievement scores as well, so we can hopefully identify any underlying learning difficulties and start addressing them.
  3. As she heads into her last year of primary school in 2017, we are getting everything aligned in order to apply for funding and assistance for high school. We’ve learned from Gilbert’s current transition process that we need to have everything in place early on, so we can meet all the deadlines throughout the enrolment process.
  4. In our school, the Department of Education requires confirmation of diagnosis every two years to support funding applications and to inform the IEP process. As Matilda’s Aspergers diagnosis has not made her eligible for individual funding throughout primary school we haven’t bothered with providing this confirmation up until now. However, as we are rapidly approaching high school, it’s time to re-enter the IEP system and seek the help that she needs.

For the reassessment process, I approached Gilbert’s current psychologist for help. He has assigned an intern to run the testing and will supervise the evaluation process to ensure the integrity of the results.

We’ve filled out four different parent/carer questionnaires, while Matilda’s teacher has also completed three. Instead of undergoing a full ADOS assessment, the psychologist is using previous diagnostic reports, the completed questionnaires and observation throughout the assessment sessions in order to make a recommendation of diagnosis.

The sessions themselves have been devoted to interviewing Matilda and myself, performing IQ and achievement testing and focusing on how Matilda feels about her own performance, self-confidence and self-esteem.

We have one more session to attend before the intern and the psychologist sit down to go over the information and develop a report with their findings.

Matilda has loved her time with the psychologist and has relished the dedicated one-on-one time with an adult. She’s enjoyed undertaking the tests she’s been asked to perform and has told me she will be sad once the sessions are over next week.

She’s also confided that she hopes she can still call herself an “Aspie” once the reassessment is over. She loves being a little different and is starting to take great pride in her diagnosis, in her personality and in herself.

Meanwhile, I’m looking forward to having some answers about her diagnosis, her academic ability and her mental health by the end of the reassessment process.

I’ll be relieved to have everything in order so we can approach next year armed and ready to request the help she will need.

Have you undertaken an autism reassessment process? How did you find it?

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14 Responses

  1. Larissa says:

    Just wondering what state you are in. My dd has a diagnosis under dsm5 but no level given as she was so young she wouldn’t cooperate with testing. I’ve been wondering about reassessment but the school principal said a level isn’t needed (we are in nsw)
    Thanks ☺

    • Kirsty says:

      We’re in NSW as well Larissa. In theory the level isn’t strictly necessary as school funding relies on the functional assessment undertaken as part of the funding application process (so even if she doesn’t have an ASD level assigned, her main challenges will still be identified through this process). And up until now we were happy to go with the flow and not pursue a reassessment as we knew we were not ever going to get funding for our daughter anyway. However, she has had a few social and emotional issues this year so we think she’s going to need more help transitioning to high school. Which is why we’ve decided to go back and pursue a diagnosis under DSM V so we have all our paperwork in order for high school. If you are getting the help you need for your girl with her current diagnosis then you should be okay. But if, like me, you are not getting the help required, seeking a reassessment might be something to consider. Feel free to email me if you want to discuss in more detail – kirsty@myhometruths.com

  2. All the best Kirsty and I think it all sounds like a good idea.

  3. Vanessa says:

    It sounds like a good idea for you guys.

    Though perhaps a bit onerous every two years for specific help. It makes sense but I guess not all people are comfortable with the doctors (or the expense!!) so that part seems like it has good sense behind it, but if that was the only reason, perhaps is a bit much.
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    • Vanessa says:

      And obviously, that is all speaking as someone outside the system, without first hand knowledge!
      Vanessa recently posted..Random Post Review – Most Popular Posts So Far in 2016

      • Kirsty says:

        I’ve always questioned the every two years requirement from the DET – it doesn’t make sense, particularly for conditions that are lifelong. It’s the same for Gilbert’s vision – I have to go back every two years and get a specialist to re-confirm that he has not magically outgrown his autism or albinism. I’ve done this every two years though because he has needed the extra support. However, Matilda has been going okay up until now and she was never eligible for funding anyway so I didn’t bother wasting money to be told that she could not be supported. But high school is fast approaching and she will need all the help she can get to navigate the unspoken social rules and expectations of high school friendships. I’m looking forward to having everything in place so we can really and truly help her x

        • Vanessa says:

          I guess it’s just government. A family member was denied a loan on their DSP income (despite having multiple permanent disabilities) because they might get better. They’ve had their conditions for decades. Their mother (and carer) was able to get funding under their old aged pension. Which makes less sense. I mean logically – disabled can stay that way and live for a long time, old age…well, it sounds horrible to write but logically they might not last the length of the loan for medical aids! But that’s the way it “worked”.

  4. Ness says:

    Best of luck with it all. Funnily enough my adult diagnonsense was in 2011 as well. I wonder if it would still stand today? I expect so. I don’t mind being Aspie either. We’re awesome!

    • Kirsty says:

      Aspies ARE awesome! I told her she can call herself an Aspie forever as that was her original diagnosis – I love that she is proud of who she is, makes me so proud to be her mum x

  5. Very good idea Kirsty being well-prepared for High School as you well know just HOW long things take in the ‘system’. Its been over a decade since I was a K-6 Principal and so much has changed in terms of eligibility and how support is allocated. What hasn’t changed is the requirements for updating and dates and labels. It is the way as you already know.

    • Kirsty says:

      It is the way it is Denyse but I do wish there was an easier way. It’s a lot of stress and financial strain on families every two years to get a confirmtation of diagnosis for a condition that is not likely to change…

  6. Grace says:

    Wishing you all the very best, Kirsty. I am a huge supporter of second, third opinions and reassessments. Sounds like so much work is involved but it’s definitely for the good. Keep us updated!

  7. Seana says:

    Hi Kirsty, we didn’t do an autism reassessment in Year 6 but we did do IQ testing for the first time and also a language assessment. These were so helpful for high school, mainly because they showed that my son appears to be a lot less affected than he is. He’s chatty and sociable however his reasoning is really poor and his language tested as severely delayed. The psych wrote a letter suggesting that his academic abilities not be considered as good as his jolliness and enthusiasm might suggest. It was SO helpful.

    Just did some language testing again – he finished school last year. Again it came out as being really poor, esp comprehension. He does well in life considering.

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