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.
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.
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.
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.
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?