Parenting Children on the Spectrum

From the start, she was affectionately known as my “Lap Limpet”.  She is our youngest, a beautiful child with perfect complexion and big brown eyes.  Whereas her older sister had been very active, keen to explore and experience life, this one was content to cuddle.

She did meet her early physical milestones, not with the enthusiasm for mobility that many children demonstrate, but because we had deliberately placed TV remotes, mobile phones and other potentially-motivating technology objects just beyond her reach.

However, she didn’t speak.  She didn’t babble, and she rarely vocalised.  We knew that both her hearing and understanding were good, and my uneasiness increased in pace with her age.

Her lack of speech wasn’t our only area of concern- she often seemed agitated and upset for no discernible reason, and she had some serious tummy troubles.  Despite my extensive research and implementation of various strategies, we realised that we didn’t know how to help Abi.  In a society that greatly values independence, and has high expectations of parents, admitting that you don’t know what to do, is hard.  Add in the harsh judgments of strangers, and it felt crushing.

I remember feeling abandoned by the medical profession in the months after Abi’s diagnosis.  We had hoped that with diagnosis, we could access further supports from the medical community, but with the exception of our Occupational Therapist (OT) and the federally-funded Early Days workshops, we received very little information or guidance.  I read voraciously, only to discover that due to the width of the spectrum, and the boy-bias of the diagnostic criteria, much of what was written wasn’t relevant to Abi.  I learned about the myriad of therapies available, but most of the behaviours they were seeking to address weren’t important to us.

Our highest priorities were her health, sensory issues, communication, and safety- then perhaps some daily living skills.  Nobody functions well if they haven’t had enough sleep, their nutritional intake is inadequate and they have ongoing tummy troubles- and a sensory system constantly teetering on the edge of fight/flight/freeze responses certainly doesn’t help!

It took a lot of time and tenacity, with some very stressful mismatches along the way, to assemble the right team of doctors and therapists for our family.  We’re very thankful to have them working with us.

It was both a relief, and initially a little uncomfortable, to have all these medical professionals in our life.  While it was fantastic to be partnering with people who understood what Abi was experiencing, and could make suitable recommendations, our private family life no longer felt completely private.  Parenting decisions and family routines around mealtimes, sleeping, toileting and outings were discussed with multiple people, strategies were suggested, and results reported back.

At first, the successes seemed small.  I hadn’t realised how many steps were involved in achieving seemingly-simple outcomes.  I am thankful that our therapists took the time to highlight these small successes, and helped me to adjust my perspective, because if I had continued to focus exclusively on the final results, I may have missed seeing Abi’s wonderful progress.

Twelve months after her diagnosis, it was a delight to see our little girl so much calmer and happier.  We loved observing her unrestrained enjoyment when her favourite TV program was shown, watching her speed and intuition when using her iPad, enjoying her sense of humour and teasing, hearing her giggles of glee when we sprinkled her with water in the back yard, firmly grasping her hand to ensure that her enthusiasm didn’t exceed her ability when traversing uneven-terrain bushwalks, and most of all staring into those beautiful big brown eyes as she slowly leaned in for a gentle kiss.

My experience of parenting Abi has been quite dissimilar from my experience of parenting Hannah, and the key difference with raising Abi is that we have not done it alone.

The African proverb, popularised by former US First Lady Hillary Rodham Clinton, is that it takes a village to raise a child.  Abi’s village includes our medical team and the staff at her school, as well as our ever-faithful family and friends.  It’s a concept that’s unusual in modern western culture, but I have found it to be very empowering.  John and I don’t have to do it all.  Even the thought of doing it all is exhausting!  We have people who can suggest strategies, and others who can help to implement them.  We have people we can contact if we’re anxious about any aspect of Abi’s health, development, or education, and people who provide practical and emotional supports.

The people of Abi’s village are very fond of her, and we love seeing the tears of joy in her OT’s eyes as we recount a major success; the broad grin of her Paediatrician as he sees her actively engaging with her Daddy; the sad smile of sympathy as we tell her GP of something she’s struggled with; her teacher’s excitement when sharing the day’s stories; and text messages from family and friends expressing their elation about Abi’s latest accomplishment.

Our close relationship with members of Abi’s village enabled us to make discreet enquiries when we saw several of Hannah’s traits listed in books we were reading about female Autism.  Hannah independently reached the same conclusion, and asked us to arrange diagnosis.

She was approaching adolescence, a time when girls’ relationships change from functional play to social interactions- and she was beginning to feel awkward, and consequently very anxious.  I don’t think our Paediatrician had ever seen such an eager response to a diagnosis before!  Hannah was relieved to know that there was a reason she was different, it wasn’t that she was just “weird”.

Hannah is very proud to be an Aspie (her preferred terminology).  She likes the way her brain works, and her different perspective of the world.  She loves being a “geek girl”, and enjoys connecting with people and groups who share her interests.

After Hannah’s diagnosis, I reflected on her childhood.  Being my firstborn, I thought that my experience of parenting Hannah had been fairly typical, yet I always had a suspicion that I’d missed something obvious in the mythical Parenting-101 class.  Her reactions and responses were often a little unusual, and I wondered how other parents managed to impart this information to their offspring, when I clearly couldn’t.  My reaction to her diagnosis matched hers – relief.  It was great to finally have an explanation, and a way forward.

As with Abi, our highest priorities for Hannah were her health and sensory needs, both of which were quickly addressed.  Hannah wanted to improve her social skills, and it’s been wonderful to see her progress.  She brings questions about specific situations to her OT sessions, and loves learning more about how people interact.  Due to her keen interest in this area, there have been a few occasions recently where Hannah’s social skills have exceeded those of her typically-developing peers.

Many family members and long-term friends have commented about how much more peaceful Hannah now is.  I believe that her diagnosis has helped her to better understand and accept herself, as well as addressing her underlying sensory issues and anxiety.

Autism isn’t a bad word in our house.  If anything, it’s a word which has brought much relief.  Our girls have always been Autistic, but identifying it has enabled us to find better ways to support them.

While the day-to-day detail of parenting children on the spectrum is very different than parenting typically-developing children, my experience is that my general parenting goals are unchanged.  Before my children were diagnosed with Autism, I wanted them to be happy and healthy- and to be the best that they could be.  Autism doesn’t change that.

I don’t know what my children will be interested in or capable of when they’re adults- but neither do most parents of similar-aged children.  I have seen many parents devastated by their child’s diagnosis, because they fear for the future.  I promised myself not to go down that path.  Worry steals peace and strength- I chose to walk forward, one step at a time.

We have now taken many steps on our journey.  We like walking together- a nice, steady amble, often along barely-cleared trails, and occasionally venturing onto the wider laneways.  The route isn’t fixed, although there are destinations we are heading towards.

Amidst the familiar, expected steps, there are also steps I had never thought we’d take, steps I never knew existed, and steps that required significant emotional processing before we proceeded.   I’m less concerned with society’s expectations these days, and a lot more flexible about my own.  Our steps are ordered by considering what’s best for our girls.

It is thrilling to see them thriving!  While Abi still prefers to observe new situations for a while before participating, she no longer clings to me with the quiet desperation that earned her the nickname of “Lap Limpet”.  Hannah has gained so much confidence that she now actively approaches new social situations, with minimal anxiety or after-effects.

John and I are also doing well.  Identifying Autism in our family upended just about everything except our love for each other and our girls- but rethinking our beliefs, plans and expectations, and reaffirming what’s important, is actually a very positive experience, although unsettling at the time.  Parenting children on the spectrum can be quite an isolating experience, as the dominant generational and cultural narratives about parenting often aren’t relevant to us- so we are especially thankful for our “village”, and their ongoing care for our family.  I know that with our love and guidance, and our village’s continued support, our girls will flourish, and become the best that they can be.


This article was published as a chapter in the recently-released book:
Parenting a Child on the Spectrum.

Copies of this book can be purchased from Authentic Publications.
That’s an affiliate link, which means that if you purchase through that link, I get some commission.

For those who know me personally (I use pseudonyms on the blog and in the book to protect my family’s privacy), or were sent this link by someone who does, I’d be happy to place a wholesale order- contact me if you’re interested.

Hierarchy of disability

Fighting my internalisation of the hierarchy of disability (CrippledScholar blog).  This post puts into words something that happens, but shouldn’t.

The basic idea behind the hierarchy is the prejudicial idea that disability is equated with being a burden or public nuisance … to maintain higher status a disabled person must not be perceived as either of those things.

 

I still hesitate to publicly label myself because I know that the additional stigma of a DSM diagnosis confirms so much of the deeply held misinformation the nondisabled public has on disability.

Well worth a read!

Parking permit pains

Until a few years ago, parents of Autistic children were able to apply for a disability parking permit, if they had medical documents confirming that the child would be unsafe crossing a parking lot (eg because the child was a runner, or had sensory issues that might cause fight/flight/freeze responses etc).  The criteria is very strict, and the quantity of paperwork daunting.  Disability parking permits are not easy to obtain.

Many disabilities, like Autism, can be invisible.  Some disabilities affect people in different ways on different days.  Some people who don’t use wheelchairs have valid disability parking permits- and have been subjected to torrents of verbal abuse, nasty notes, or interrogations.

Yes, there are definitely selfish people who are unconcerned about others’ need for those priority parking spaces.  But there are also many people with invisible disabilities who would like to participate in their community without constantly being asked to explain details that are nobody else’s business. If you are part of the self-appointed parking police, please check for a valid disability parking permit first.

Changing Places toilets

These full-sized toileting facilities first came to my attention a couple of years ago, when Abi was too big for baby change tables, standard cubicles were far too small, and our only option was to change her on the floor of disabled toilets, using a garbage bag underneath her for some small measure of hygiene.  At that time, although Changing Places were growing in the UK, they were still very limited in Australia.  There is a campaign page on their website, for people to nominate locations where they would want to see such facilities.

Mental Health and Mistreatment

I found the Field of Stones: Mental Health and Mistreatment article (Never Less than Everything blog), to be very disturbing, and rightfully so. Tricia recounts her visit to an ancient state mental health institution during her college years, where her professor insisted on his students demonstrating the highest regard for the patients who had walked these halls- and explained some history of the treatment of mentally-ill patients, in both life and death.  She recalls his discussion about how the use of restraints has gradually been eliminated over the years- and was horrified to hear recent reports about autistic children being isolated, abused and caged.  Despite the progress we have made, there are still people who want to control those who are different.  I wish I could put flowers on every one of those stones, too.

Hospital passport

The UK’s National Autistic Society has some great resources, including this hospital passport.  It can be completed either online then printed, or in writing, in advance of any hospital visit- and I think would be good for any medical appointment.  As well as the usual personal details, medical history and contact details for the patient’s significant people, it includes boxes to describe how the Autistic person would like hospital staff to communicate with them, how the Autistic person communicates, experiences pain and communicates pain, and what causes distress. The guidelines document contains many questions to consider when writing statements to include in the hospital passport. For example, when considering how staff are to communicate with the Autistic person- do questions need to be short and specific, do you need things written down, is there a preference for pictures or symbols, will pointing/demonstrating help, will you need a lot of time to think about and answer questions?  The final page describes the five key principles of the Mental Capacity Act, and states “Because I have autism please do not assume that I do not have mental capacity”.