Some are hesitant about getting a diagnosis - of labelling their children for fear of what a diagnosis will bring. I can say without a doubt three years on that getting a diagnosis was the best thing we could have done for Amy - and for us. Having a diagnosis has given us a way of explaining and understanding Amy's special needs - and her differences. It has opened us up to a world of specialists, given us a child disability allowance (not much - but things like private swimming lessons add up after a while), and respite care (for much needed dates for my husband and I). Amy went to RDA (riding for the disabled) for a year (aged four - five years old) - something she could have only done with a diagnosis.
It was definitely a positive that just as Amy was due to start Kindergarten; she received a diagnosis of ASD. This meant straight from the onset that we were able to access the help we were eligible to receive - the Ministry of Education were on board almost immediately and through the assessment of an early intervention teacher; Amy had a teacher's aide in her Kindy years. Her diagnosis meant her Head Teacher at her Kindy attended a local workshop on ASD -with my husband and I. This knowledge gained from the top filtered down to all the other Kindy teachers so that Amy was left in capable and understanding hands when I dropped her off at Kindy.
Thanks to early intervention, and the amazing two years I worked closely with our assigned early intervention teacher; Amy's transition into school also went well. Yes there have been issues at school over the last year yet because of a diagnosis I have been able to access and seek the support I needed to ensure as many of Amy's needs as possible are met at school. We currently have a Behavioural Specialist, an Occupational Therapist and an RTLB (Resource and Learning Teacher) on board. Amy is also still under the care of a Pediatrician.
It isn't always easy. Going down the road of choosing a diagnosis can be a lot of work. There is the time needed for on-going appointments with specialists, group meetings involved with all those that "work" with Amy from time to time, and constant contact with her classroom teachers, SENCO (special needs coordinator at the school) and on occasion, Principal. My relationship with the school is a lot more complicated than the parent of the neurotypical child.
There are also gaps sometimes in understanding and experience and part of being a parent of a child with special needs, is being their voice. Having a diagnosis adds validity to any discussions or negotiations. There can be a lot of repeating of information, justifying, explaining, and advocating to do with those in the educational sector. Some "battles" are won and some are lost - sometimes it seems you have to choose which ones need to be fought and which ones need to either be put on the backburner or binned. But having a diagnosis gives credibility to any issues that need to be sorted out - particularly when supported by professionals.
Being open with those in Amy's circle about her ASD requires a lot of time and energy. Yet I don't think there has ever been a negative in going down this route. The only wee set-back was when a social story written about her ASD for her class last year was read out and backfired when a couple of students got the wrong end of the stick and one child verbally bullied her for having a "different brain." It was a devastating experience for Amy and one she hasn't completely gotten over. But the sad reality is, she is prone to being teased/bullied- the irony is her first instance of significant bullying occurred because of something that was meant to be a preventative measure.
Having a diagnosis has helped greatly with the activities Amelia has participated in over the years - aside from RDA she has been involved in gymnastics, swimming lessons, and ballet. Teachers and instructors out there have varying degrees of experience with ASD but at least disclosing Amy's ASD gives them a heads-up that her ASD may need to be catered for.
We have chosen to reveal Amy's ASD to all who are in our circle - this includes extended family, friends and coworkers. I believe openness around a diagnosis can only increase understanding. In the early years since Amy has always come across as "high functioning" it was a tempting to sometimes think that her ASD was just a phase - that one day it would all pass. But as she approaches her sixth birthday, I know that she has ASD for life. Her challenges may decrease or at least be managed a lot more easily as she gets older - but her ASD will always be there. Sometimes I wish I didn't have to label her but her differences are more obvious the older she gets - it only seems fair that I continue to inform others so that she is treated with the respect and understanding she deserves.
As a mother of a child with ASD, I have been introduced to a whole new world and in particular a whole new circle of friends through Autism New Zealand. I have been going to local coffee group meetings for three years and am now on the committee locally. My membership with Autism New Zealand has been invaluable. Although we face parenting challenges like all parents; there are some on-going issues that only those who live with ASD would truly understand. Thanks to Autism New Zealand I have been to several workshops locally. There is nothing like attending a workshop run by an expert in the field of ASD to get the confirmation that your child's diagnosis is very real. Every time I attend a workshop I am so glad we went down the route we did - to seek a diagnosis. I know it was the right thing for us as a family.
