According to statistics, 1 in 100 people in Australia have autism. But have you ever wondered what it’s like to go through an autism diagnosis? What about a girl being diagnosed with autism?
The first signs of autism
Our daughter was in year 1 when her teacher invited us in for a parent meeting. In the meeting, the teacher raised a number of concerns about her behaviour in class. These included
- refusing to follow instructions in class
- not wanting to sit on the mat with the rest of the children
- frequently getting upset at school and crying
- using baby voices or accents when talking, rather than using a normal voice.
- being anxious and clingy in new situations
- being on the outer edge of social groups with few friends
On reflection, some of these behaviours were also seen at home, such as:
- getting easily upset, angry and experiencing big emotions that would lead to yelling or hitting
- being fussy about eating and sleeping
- being unwilling to try new things
- talking through toys or puppets rather than communicating directly
- biting, sucking and chewing things like clothes, cushions
Combined with the fact that her older brother had also been diagnosed with autism, this was enough to pursue a diagnosis.
The start of getting a diagnosis
After deciding to pursue a diagnosis, we had two options.
Option one. We could go to the GP and get a referral for a public autism assessment through the CAT (Children’s Assessment Team) at our local public hospital. This wouldn’t cost anything, but had a wait time of about 18 months.
Option two. Find a private health professional (psychologist, speech pathologist or occupational therapist) that conducts autism assessments. Hope for a cancellation, as the wait list could still be 12 months, and be prepared to pay about $1,800 for the consult, assessment and report.
We had taken option one with our son, but went with option two for our daughter. Our daughter was 6 and there was a benefit to seeking a diagnosis before she turned 7. Before age 7, she would qualify for early intervention funding through ndis and give access to more supports if she was autistic. A diagnosis after age 7 would not attract as much funding or support.
An autism diagnosis process
We contacted a local psychologist who worked with an independent speech pathologist to perform autism assessments. Assessments need to be conducted by dual practitioners – a psychologist alone cannot complete an assessment.
We were put on a wait list and got contacted about 5 months later with an opportunity to fill a cancelled appointment – with a week’s notice.
Each therapist had registration forms for us to fill out, and we completed an 11 page parent questionnaire plus a two page Vanderbilt Assessment. The psychologist spoke to the teacher over the phone, and the teacher also completed survey forms about her behaviour. A 5 page form about our child’s behaviour at school, and the two page Vanderbilt Assessment. Because of the extensive information collected beforehand, the assessment itself ran for 2.5 hours one afternoon.
A week after the appointment, we had the report that determined that our daughter qualified for an autism identity.
What questions do they ask in an autism assessment?
The questionnaires asked for information like:
- what strengths and main interests our child has
- what concerns we have about our child
- when our child reached developmental milestones like walking, talking and toilet training
- how well our child makes and maintains friendships
- how our child relates with adults like teachers and family friends
- what they do at recess and lunch time
- if they have difficulty managing emotions and coping if things ‘don’t go their way’
- if they interpret language literally and struggle to follow instructions
- if they can give eye contact and use non-verbal behaviours like facial expressions and gestures
- if they have usual speech, or issues with gross/fine motor skills or evidence of stimming like flapping, spinning, rocking
- how they transition away from favourite activities and if they are flexible with routine changes
- what obsessive interests they have, if any
- what sensory sensitivities they have with touch, sight, sounds, smells, tastes
They also ask more general questions about family, the pregnancy and birth, medical history, schooling, medications, and hearing test and vision test results.
What happens after an autism diagnosis
We notified the school and sent them a copy of the final report.
We also completed an NDIS Access Request form with the report attached. Once we received access and had goals in our NDIS Plan, then we contacted therapists as recommended by the report and started seeking therapy.
The stages of grief after an autism diagnosis
Personally though, after a diagnosis is like the seven stages of grief, even if it’s expected.
I remember being at work when I received the phone call from the psychologist saying our daughter has autism. I burst into tears with the shock of it. Even half-expecting the diagnosis and having gone through the process with our son, it was still shocking.
The denial came before the assessment. Comparing our daughter with our son, we denied that an autism diagnosis would be possible. She was more social, didn’t have obsessive interests, and fitted in at school well most of the time. She was so different to our autistic son, surely it wasn’t possible that she was autistic.
Depression came next, with sadness about the loss of what might be. Would our children succeed at school, would they go on to further study, get a job, get married or have their own kids? The things you build in your mind as a vision of the future come crashing down. And there’s sadness that comes with the thought that the future is going to be different. Of how full time work and climbing the career ladder probably isn’t in your future either, because you’re going to need time to look after your child instead.
Exhaustion and tiredness followed soon after. The exhaustion thinking about the long, time consuming journey ahead. Of how long it would take to navigate the NDIS, to attend therapies, to develop the supports needed to make sure our child is coping and successful enough.
Processing grief after a diagnosis – out the other side
Finally, some acceptance comes that this is your journey in life now. You are a parent of an autistic child. You need endless amounts of patience, huge skills in resilience, emotional regulation and structuring transitions. With acceptance, you will become an advocate, that annoying parent emailing the teacher every week. Your life consists of part time work and driving kids to appointments and completing therapy homework.
When I talk to parents of adult autistic children, there’s a sense of hope. If we continue building supports, then our child might turn out like these other autistic adults. A bit different, but successful in their own ways.
Conclusion: going through an autism diagnosis with a girl
Autism looks different in girls than in boys. But the diagnosis process itself and the aftermath is the same.
What helps is being prepared with information and documentation ready when you are asked tons of questions about behaviours and development.
Be prepared to experience a rollercoaster of emotions and grief after a diagnosis. That’s normal, so practice some self-care and connect with your social supports to help you get through.