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.

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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.

“Ghost Boy”

One of the best books I have read in a while is “Ghost Boy“, an autobiography by Martin Pistorius. At age 12, he became sick with an illness the doctors were unable to diagnose, which resulted in severe muscle weaknesses and lack of speech. He was unable to use his body to show his family and caregivers that he was mentally aware, so his physical needs were attended to, while his unstimulated mind retreated into imagination. His use of language is beautiful, but also rightfully disturbing, as he describes the abuses he suffered at the hands of certain “care”-givers. Eventually, one caregiver realised that he was understanding and responding to her, and spoke to his parents about having him assessed for AAC (Augmentative and Alternative Communication). He described the joy of communication, then discovered some of its limitations- and ultimately its power to help facilitate his dreams. As we are starting down the road of AAC ourselves, I found his comments and experiences to be insightful.

I Am Aspienwoman- review

I have recently finished reading I Am AspienWoman by Tania Marshall.  It is similar in style to her previous book (I Am AspienGirl), visually stunning with striking photos throughout, and quotes from both women on the spectrum, and their families/friends/colleagues/psychologists.  Rather than being a textbook list of typical traits of “AspienWomen”, she has allowed the women to speak for themselves- their diversity, strengths and challenges.  Some of the later sections in the book are a Mentors section (with introduction, strengths, tips and contact details); a list of commonly observed characteristics, traits and strengths of adult females; and a list of reasons to obtain an adult formal diagnosis.  Very thorough, visual and positive.

Managing dysregulation

We have autism all wrong: The radical new approach we need to understand and treat it, an excerpt from “Uniquely Human: a different way of seeing autism” by Barry Prizant.

Instead of just managing behaviours, he suggests listening carefully, observing closely, and seeking to understand the child’s perspective and experience.

Usually the answer is that the person is experiencing some degree of emotional dysregulation. Our neurological systems help by filtering out excessive stimulation, telling us when we’re hungry or tired or when to protect ourselves from danger. People with autism, primarily due to underlying neurology (the way the brain’s wiring works), are unusually vulnerable to everyday emotional and physiological challenges. So they experience more feelings of discomfort, anxiety, and confusion than others. They also have more difficulty learning how to cope with these feelings and challenges.

To be clear: Difficulty staying well regulated emotionally and physiologically should be a core, defining feature of autism. Unfortunately professionals have long overlooked this, focusing on the resulting behaviors instead of the underlying causes.

Here is the important irony: Most of the behaviors commonly labeled “autistic behaviors” aren’t actually deficits at all. They’re strategies the person uses to feel better regulated emotionally.

Ido in Autismland

Ido in Autismland, by Ido Kedar.  A touching and well-written book, describing the feelings, memories and hopes of an autistic teenage boy, formerly unable to communicate.  How he was assumed to be intellectually impaired because he was non-verbal and had motor control issues, yet had no means of communicating his intelligence to his family or therapists for many years.  He now communicates by using a letter-board, as taught through Rapid Prompting Method (RPM).  This book chronicles his journey from the outpouring of years of frustration, through his goals to manage various difficulties he encounters with his autism, and his determination to get an education and go to college.  He has a very insightful mind and a beautiful gentle spirit, and I enjoyed learning from him.

Loud Hands

Loud Hands: Autistic people, speaking, edited by Julia Bascom, is a compilation of essays by autistic people.

From the Foreword: “The autistic community needs to be heard, speaking in our own ways on our own terms about the items on our agenda, on an unprecedented scale, reaching a much broader audience than we ever have been able to before.”

There are articles contributed by several autistic authors whose work I have previously enjoyed (and shared here), and a few who I have looked up since reading this book.  The range of subjects covered is impressive, as are the references provided!  There are various histories (eg the development of the autistic community and its culture; the future and the past of autism advocacy), self-acceptance articles (including non-speaking, stimming, echolalia, assistive technology etc), explanations of “Loud Hands”, and the uses of language (dislike of “person first”, liberation from the pathology paradigm and embracing neurodiversity etc).

SN books and movies

FriendshipCircle has lists of special needs stories, movies, novels, documentaries and children’s books.  I like lists :).

Adulting

Adulting: how to become a grown-up in 468 easy(ish) steps, by Kelly Williams Brown. Subjects covered include domesticity (finding an apartment and furniture, cleaning), cooking, some useful social rules, finding and keeping a job, money, maintenance etc- in great detail.  (This book wasn’t specifically written for an autistic audience, but I can imagine giving a book like this as a reference to my children as they approach independence).  Some of the specific references are American, but the general principles are useful everywhere.

Cure your child with food

Cure your child with food, by Kelly Dorfman. Despite the controversy of the “c” word in autism circles, I did find this an interesting read.  The book is a series of case files, demonstrating her “nutrition detective” strategies, and examples of how eliminating certain foods or supplementing other nutrients helped with whatever was ailing the child.  I have noted a few things to discuss with our doctor and dietitian!

Asperger Syndrome and Anxiety

Asperger Syndrome and Anxiety, by Nick Dubin.  Written with an Aspie’s logical ordering and meticulous attention to detail, Nick is also a psychology doctorate student – so he knows his subject well!

The book starts with an explanation of how anxiety works, how to control it, and specifics about Asperger’s and anxiety.  It then moves into a chapter on Cognitive-behavioural therapy – which was by no means a light read, but by the end, I felt that I understood this much better, so it was worth persevering through.  It wasn’t a difficult read due to the writing – more that this can be a complex subject that takes concentration to understand.  Other subjects included mindfulness, and how anxiety can affect relationships, employment, shame, and health, and a chapter on anxiety and spirituality.  I found all but the last of these insightful, but he did state that that chapter was his personal viewpoints and opinions, which were eclectic.

As a first reading, I found this book interesting, to be able to understand the thought processes behind anxiety, especially as experienced by Aspies.  To use it as a self-help book (which I think it would be well-suited for, for adults) would require several readings and processing time between.