THE TOP TEN THINGS PARENTS SHOULD KNOW ABOUT GIRLS ON THE SPECTRUM

Feature photo: Becca Lory with her mom ©Becca Lory 2018

A Spectrum Women collaboration, edited by Maura Campbell

In honour of International Women’s Day, the Spectrum Women writers have compiled a list of things we think it’s particularly important for parents or carers of girls on the autism spectrum to know.

Maura Campbell “The Shirley Temple years” ©Maura Campbell 2018

1. Recognise how autism presents differently in girls

In adult studies, the 4:1 male/female ratio in autism diagnosis disappears. This means autistic girls are not rare. Persist when they say so. Look for intensity and insistence on sameness. Many of our behaviours are quite typical but we won’t choose to stop, have trouble when things aren’t done ‘just so’ and resist change. At first glance, we may appear to you to have mental health issues due to eating disorders, suicidal thinking or self-abuse, and so diagnosticians need to dig deeper when they see anxiety, depression or food challenges AND sensory reactions. We have a range of levels of social ability, and clinicians should retire the term ‘she’s too social to be autistic’.

Jeanette Purkis age 10 ©Jeanette Purkis 2018

2. There’s more to life than being a social butterfly

Making friends should not be forced on us. It will come in time and may be in a non-standard sort of way — and that’s okay as long as it is safe. Guide and support us on safety so that connections are not made in unsafe spaces.

3. Respect the sensory

Believe us when we say it’s too loud, it smells too bad or it doesn’t taste right. It may seem okay to you but be hell for us. If our senses are overloaded, other things will suffer including our learning.

4. We may be ‘tomboys’, or gender-fluid

Gender is a complex and varied thing. Many of us are non-binary or trans, in which case gendered lists of characteristics and traits may actually be unhelpful. Among those of us who identify as female, we may not be particularly interested in ‘girly’ things or we may be intensely interested in fashion and make-up.

Barb Cook age 7 with her mum ©Barb Cook 2018

5. We love being in our own world

If we don’t hear what you’ve said, we are not being rude; it’s just that there is so much going on in our heads that we can’t always hear you and it can be hard for us to come back completely to the real world quickly and respond accordingly.

6. Our intense interests are important to us

The things we enjoy should be valued, no more or less than other people’s interests. It doesn’t matter if no one else understands. Intense interests should be encouraged and developed, even though they may seem silly or age inappropriate to you. If you do encourage our interests as we grow up, they could lead to an extremely fulfilling career, which is much better than having us pursue something more socially acceptable and ending up miserable in adulthood.

Jen Elcheson age 8 with her brother ©Jen Elcheson 2018

7. We shouldn’t be forced to adopt behaviours that feel unnatural to us

Don’t keep making us do something that makes us feel sad or frustrated simply because you think it is how we ‘should’ behave in the world. Let go of your own preconceptions and let us just ‘be’.

8. Just because we’re quiet, it doesn’t mean we’re okay

Sometimes we are frozen with anxiety, silenced by overwhelm, or have lost our motivation from depression. And, sometimes, we are purposefully giving our brains and body a break from the outside world. All behaviour means something. Don’t assume, ask. Sometimes we might not be ready to talk or may struggle to understand what’s wrong, so do not press us when that happens.

Lisa Morgan age 13 ©Lisa Morgan 2018

9. We hear what you say about us

We hear a lot of what you say about us to each other, the doctor, the therapist… and we notice when you never once ask us about ourselves. We want to be directly involved in what happens to us: ‘Everything about Us with Us’. Always presume competence and encourage independence, but also make sure supports are readily available as they are needed. Trust us. Ask us. Listen to us.

10. Celebrate what’s great about us!

Focus on our strengths and talents more than our challenges. If you only address our deficits you will undermine our fragile sense of self and damage our self-esteem. There is so much about us that is wonderful.  Your main job as a parent to love us unconditionally, so accept us as we are. We are being the person we were born to be.

If you are looking for further information on how to understand and support women and girls on the autism spectrum, the upcoming book, ‘Spectrum Women — Walking to the Beat of Autism’ (edited by Barb Cook and Dr Michelle Garnett) is due to be published mid-2018 by Jessica Kingsley Publishers.

Further information on autistic traits in girls can be found in ‘Aspergirls: Empowering Females with Asperger Syndrome’ by Rudy Simone and ‘Everyday Aspergers’ by Samantha Craft.

Read more about the Spectrum Women writers here

About Barb Cook 14 Articles
Barb Cook - Editor in Chief Formally identified on the autism spectrum along with ADHD and phonological dyslexia in 2009 at the age of 40, Barb is founder and editor in chief of Spectrum Women Magazine and editor and co-author of Spectrum Women: Walking to the Beat of Autism, published by Jessica Kingsley Publishers. Barb is a highly committed advocate, writer, speaker and keen motorcyclist, making a variety of appearances on Australian radio, television, in newspapers and magazines and the SBS television documentary, The Chameleons: Women with Autism. She is co-founder of Bikers for Autism Australia, Community Council Member of AASET (Autistic Adults and other Stakeholders Engaged Together) and an independent autistic peer reviewer of the journal Autism in Adulthood. Recently Barb was awarded a Special Commendation in the 2017 Autism Queensland Creative Futures Awards by the Queensland Governor, his Excellency Paul De Jersey. Barb is also currently studying a Master of Autism at the University of Wollongong (Australia) and a businesswoman providing consulting, mentoring and life coaching services as well as workshops, webinars and presentations for the neurodiverse community. Barb was recently awarded the University of Wollongong Community Engagement Grant as part of and Community of Practice Lead for a research project "Facilitating the voice and self-determination of young adults on the autism spectrum. Barb currently rides a Suzuki V-Strom DL1000 called Ron ‘Strom’ Burgundy and implements a combination of her passion for motorcycling with her dedication in advocacy, creating acceptance and pushing for action to improve the lives for women and girls, increasing opportunities for employment for all and supporting the neurodiverse community in attaining meaningful and fulfilling futures.