By Ruby Roberts
If you saw Sarah picking her two kids up after school, you might not think they stood out from any of the other families. Chances are, you would believe her quiet son and expressive, energetic daughter are run-of-the-mill kids, but behind closed doors and in the privacy of their minds, the family is far from typical. All four of them have been diagnosed with Asperger Syndrome.
I have enjoyed an online relationship with Sarah for quite some time, and while she has always been very open about her life and experiences, I have often wondered what life might be like for her family; how they interact and function. Would their lives be different to those of typical families, or similar? How do they make things work in a world not built for them?
Asperger Syndrome has received a lot of attention online and in the mainstream media. There are lots of amazing aspie YouTube vloggers talking about their experience. There have also been a number of bestseller books written about and by people on the autism spectrum. I will list some of these at the end of this article. There is a particular fascination with the link between autism and genius, and many people claim that everyone from Beethoven to Einstein were aspies. Although these claims can never be proven, people have certainly identified certain traits in these highly gifted people that might also be seen in someone on the spectrum.
As is fairly typical of the Internet, there are as many definitions as there are people writing them, and no real way of telling the experts from the quacks. So, rightly or wrongly, I resorted to Wiki:
“Asperger syndrome (AS), also known as Asperger disorder (AD), is an autism spectrum disorder (ASD) that is characterized by significant difficulties in social interaction and nonverbal communication, alongside restricted and repetitive patterns of behavior and interests. It differs from other autism spectrum disorders by its relative preservation of linguistic and cognitive development. Although not required for diagnosis, physical clumsiness and atypical (peculiar, odd) use of language are frequently reported.”1
As far as I can tell from my rambling net-surfs, the stereotypical aspie looks something like this: generally male, nerdy appearance, has an obsession with something obscure, like trains or historical dates that he recites at people in a strange monotone instead of having conversations. Someone chucks a box of matches on the ground and he can count them without even looking at them. He lacks emotional complexity and doesn’t make eye contact.
Do all these definitions and portrayals reflect family life in Sarah’s household? If we went by the dominant media representation of Asperger Syndrome, we might picture her living in a family of geeks, sitting around doing maths or building robots or something.
Sarah herself doesn’t come across as being compromised socially, nor does she resemble any stereotype. Sarah is Sarah, first and foremost. While she shares many traits common among aspies, she does not avoid people. She suspects people might find her a little odd, but she is active in the school community and is known for her friendliness. While some people on the autism spectrum might tend to isolate themselves and avoid social occasions, Sarah is not one of them. Even so, these interactions drain her to the point of exhaustion and it can take many hours for her to recover.
“There’s a saying I like,” Sarah says, “If you have met one person with Asperger Syndrome, you have met one person with Asperger Syndrome.”
She sees this first hand, with her husband and two children. All three are quite different from one another. Temperamentally, her son and daughter are worlds apart, for example. Her daughter has a very mercurial disposition, prone to highs and lows, while her son and husband are much more laid back.
Women with Asperger Syndrome particularly are underdiagnosed. Well-known asperger’s expert, Dr Tony Atwood believes that the syndrome tends to manifest in very different ways for women. Many of them, like Sarah, are able to learn to mimic social behaviour of neurotypical people so effectively that by the time they reach adulthood, they can appear to be much more socially adept than they really are. Also, they tend to be more interested in human interaction and fantasy worlds than facts and figures, which are often seen in men with autism.
Interestingly, Dr Atwood has also noted that aspie women are heavily represented in the caring professions, which flies in the face of the notion that all people on the autism spectrum lack empathy. Women often have more interest in fantasy and fictional lives than men, who have often been portrayed as lacking in imagination.
“While boys with Asperger syndrome can fixate on facts, and some girls with Asperger syndrome can also have an encyclopaedic knowledge of specific topics, there can be an intense interest in reading and escaping into fiction, enjoying a fantasy world, creating a new persona, talking to imaginary friends and writing fiction at an early age,” Dr Atwood said.
“Another escape is into the exciting world of nature, having an intuitive understanding of animals, not people. Animals become loyal friends, eager to see and be with you, with her feeing safe from being teased or rejected and appreciated by her animal friends.”
According to Attwood, this newly recognised deviation from the dominant male representation means the syndrome is often not recognised in women until adulthood, if at all. Sarah herself only began to suspect that she might have Asperger Syndrome when she took her daughter in for diagnosis.
“I didn’t realise until this year,” she said.
“I was looking into Asperger’s in Girls for Lilith, but what I read fit me instead. So I read more and more and found myself more and more. I booked in to see a psychologist who gave me two big tests to complete, and when I came back she said my score landed in the criteria for Asperger’.”
Prior to that, Sarah had no real label for herself, and battled to understand why she felt so out of place with other people.
“I’ve always been looking for myself,” she said.
“I looked in the goth culture, the fetish culture, the Pagan circles, the UFOlogist, the Starseeds, I so desperately wanted to know why I was so different and ‘weird’ and there it was.”
How do Sarah and her family differ from neurotypical families (those not on the spectrum). Their evening routines are quite different for a start.
All of them need to unwind by spending plenty of time alone. After the kids come home from school, each family member tends to spend some time absorbed in solitary pursuits, like gaming and reading, to recover from the social pressures of day-to-day life. Her son and husband relish this solitary time, but Sarah says her daughter needs more attention.
“The two boys and I would be quite happy to be all in the same room on our respective computers, doing our thing, we talk to each other every now and then but not a lot. Lilith needs a lot of attention, even now she’s on the play station and she’s talking to herself. Every now and again she will call out a question or just a statement out of the blue.”
While some people might judge this ‘screen time,’ it enables Sarah and her family to enjoy an equilibrium that works for them.
“What I would really like other mums to understand is that families with autistic kids or adults function in ways that are completely different to the norm,” Sarah says.
“We treat our children differently because that is what works for us. For parents on the spectrum it is really challenging to be effective, affectionate parents sometimes and what we really need is patience and understanding.”
Sarah keeps the family running with plenty of structure and a whiteboard listing their to-do lists and routines. With help from psychologists, they work to ensure that each member is supported and can relax at home, after the pressures of living in a world not built with them in mind.
The diagnosis has also offered Sarah and her family a degree of self-awareness that helps them all to pace themselves and take steps to keep stress to a minimum.
“My diagnosis itself has made it easier in some respects because I understand myself better,” she says.
“I understand now that if I have a BIG day socially, I am going to be tired and drained in the afternoon. I might not be able to help my son with his homework, or cook a proper dinner. So I am able to put things in place to help – call my mum, ask her to take the kids for a while, get to the shops to organise an easy dinner.”
Like all families, they have their moments. Sometimes the pressure of keeping a family running smoothly exhausts parents and kids alike and leads to conflict. The challenges of being a present parent can be particularly daunting to some aspies2, who can become overwhelmed. This can be particularly difficult if all members of the family are overtired.
“Yeah we have had meltdowns at the same time, and it is just beyond awful,” Sarah says. “It’s almost always at the end of the day when we are tired and just wanting to have some quiet time. Kids won’t go to bed, we get snappy and then flip out – which of course triggers the kids and everyone is yelling or crying or both.
We just have to tell the kids ‘Look, mum and dad are really tired and feeling very upset’. We just have to walk away. We try to go back after we’ve calmed down to apologise and give cuddles and kisses.
With awareness, Sarah has become much more able to monitor her level of energy and pace herself socially, so that she can continue to be effective as a parent. She also calls on support from her mother when things become too much.
People often presume that all people with autism are solitary creatures who never get lonely, but this is often not the case. Sarah says she wants to make friends, but she needs time and space to establish connections.
“If we decline an invitation for coffee it doesn’t mean we don’t like you, it just means we need some more time,” she says.
“Please don’t give up on establishing a friendship. Being an Autistic parent can be really lonely. We need understanding friends.”
People with autism often connect with others through shared interests. This may either be through topical discussions or activities. Sarah likes cooking, and would love to find others who enjoy it also. She says she likes plenty of warning and time to prepare for social events, and does not like surprise visits.
It’s not just aspie parents who need understanding. Kids with Asperger Syndrome are also frequently misunderstood, as Sarah has seen firsthand. Like many children on the autism spectrum, Sarah’s kids are bright, but have difficulty processing what is going on around them, particularly in unfamiliar environments. This can cause terrible anxiety, genuine fear and some quite extreme behaviours that can come across as ‘naughtiness’ to a judgemental member of the public.
“Just a few months back, in July, we were at a small local festival in my home town,” Sarah tells me.
“The kids had both had food they shouldn’t have (food intolerance – a whole other story) and were reacting badly. One of them (I can’t remember which) had put their can of lemonade down at a stall and wanted to go back and get it. This was 15 minutes after we had left the scene.
I told them it would be gone and all hell broke loose. Both kids started screaming, pulling on my arms, crying, spitting, screeching. Everyone stared, a few people whispered to each other. No one offered to help or offered me words of encouragement. It was a hot day, and we had been up since 5am. I had to walk them two blocks down the street to the car, all the while they are yelling and pulling on me. It was extremely embarassing. Unfortunately with autism, unlike other disabilities, people can’t SEE it, they don’t ‘look disabled’. They aren’t, but you get what I mean, right?
So, when they are having a meltdown like they were that day people just see out-of-control kids and an ineffective parent.
We are a no-smack household, and I cannot tell you how many times I’ve been told to my face (not just overheard in whispers) that my kids just need a damn good smack. I have even heard this from other children – teens.”
Sarah recalls another humiliating and traumatic incident with a swimming instructor, who misunderstood her daughter.
“She told me I had to be firmer with my girl, that she was just testing me and I was giving in to her. She suffers from anxiety (Clinical PTSD) as a co-morbid condition to her Autism and people just think she’s spoiled,” she says.
Sarah’s daughter was terrified in the water, screaming for her mother to come and help her.
“The instructor told me not to move, to stay seated and ignore her. I was too shocked to follow my gut and tell her to get effed, grab my child and high-tail it out of there. I went against every instinct and did was I was told. It was the most horrible experience of my life. It took a few days of really reaffirming Lily that I will always protect her for her to feel secure again.”
Sarah would like people to react with more sympathy and less judgement when witnessing a scene like this. Like any other parent, she just wants support. This only becomes more true when she is going through something that is challenging for her as well as her kids.
“I wish people would be more understanding of kids in meltdown,” she says. “We don’t like it either, you know? And neither do the kids while they are going through it. It is tiring and stressful on their little bodies when they are so overwhelmed and out of control
We don’t need stares, we need smiles. We need, ‘You’re doing a good job, Mum’. We need ‘Hey, would you me to carry that for you, so you can carry your child?’. Compassion goes a long way. Stares don’t help, telling me to smack my autistic child doesn’t help and all it does is isolate us further.
I don’t really know what the answer to this is… more education? But people need to be willing to learn, and so many people just aren’t. It’s easier for them to stick to the ‘shit kid/shit parent’ paradigm.”
Although families like Sarah’s face a range of tricky moments, the picture is by no means all bleak. Being on the autism spectrum has also brought some real strengths, which Sarah and her husband are able to use as parents, and which enrich each family member.
“Aspies are really visual thinkers, and are normally pretty great at maths and science and music,” she says.
“Research assignments will always have the best of help! We can sit down and have amazing philosophical discussions with our kids about the universe and religion and beliefs.”
When all is said and done, Sarah’s family is a happy one, full of dogs and fertile, vivid minds. They might not always go about life or even see it in a typical way, but they are uniquely gifted, just like every one of us. Like us all, they don’t want to be prematurely judged, and while they might take a while to make friendships, the friends they do have are richly rewarded.
A range of great resources is available online for people wanting to know more about Asperger Syndrome and Autism Spectrum Disorders (ASD). Here are a few:
‘Wrongplanet.net‘ – An online community for people with Asperger Syndrome or ASD. Also has forums for families and friends, or people with other brain differences, like bipolar disorder, schizophrenia and Tourettes syndrome.
‘Born on a Blue Day‘ by Daniel Tammet: Autobiography of a man with Asperger syndrome. Daniel also has savant skills and synaesthesia. He sees numbers as colours and learned to speak fluent Icelandic in a few weeks. Although this is not typical of many people with Asperger syndrome, he offers a firsthand account of his experience of autism.
‘Nobody, Nowhere’ by Donna Williams: Donna’s autobiography was one of the first bestselling novels about living with autism. Donna’s gut-wrenching honesty about her traumatic childhood might upset some people, but she does give a very detailed account of what goes on inside her mind.
YouTube vloggers, the AnnMish and Willow Hope: these young women have developed a large following as they ask questions from the general public and document their lives and relationships and experience of autism.
1 The article also points out that Asperger Syndrome no longer exists in the most recent Diagnostic and Statistical Manual of Mental Disorders (DSMV) and has now been subsumed by the broader diagnosis of high functioning autism, with slightly different diagnostic criteria.
22 There is a lot of debate among the disability community about terminology – generally, people with disabilities prefer to be called ‘someone with a disability’, rather than ‘a disabled person’. This gives primacy to their humanity, not their disability. I believe this is an important distinction and strive to use this language myself.
Conversely, many aspies prefer to be called an autistic person or an aspie. To them, autism is a trait, rather than a condition or affliction. So, just as we would say, ‘an artistic person,’ we could also say ‘an aspie person’. These folks argue that they see their autism as integral to their identity, and even a source of community, strength and pride in who they are; a label they wear gladly. It is the same among some members of the deaf community, who have a strong culture and their own language.
In addition, some autistic people say that their more concrete thinking style makes ‘person with autism’ sound like ‘person with a rubber duck’.
Given this, I have taken this terminology on. I hope this explanation will minimise any offence unwittingly caused to people who may adopt a different stance on respectful language usage.
Ruby Roberts is a long-time fan of Mamabake, a mother of one, and a part time personal carer. She is a compulsive reader, writer and Facebooker who is prepared to weather the occasional online squabble if it means she gets to enjoy genuine discussions with deep thinkers. She thinks all folk are uniquely gifted – some are just more open-minded about what intelligence constitutes than others. Ruby is in the process of renovating her cooking, craft and philosophy blog and it looks like a dog’s breakfast at the moment – one day it will be presentable enough to share. WATCH THIS SPACE. She has about a zillion projects on the go, each in varying stages of completion. Some might sit there for decades. She likes long distance hiking and camping, conversation and correspondence, cooking, eating and creating very amateur-looking craft. Her latest hobby is fermenting stuff and making alcoholic beverages, which is really rather funny because she’s practically a wowser. Ruby is finding it very difficult to encapsulate herself in 100 words or less while writing in the third person. However, she is always looking for new pals, so go ahead and talk to her! She won’t bite. Much. Contact Ruby: firstname.lastname@example.org
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Read Ruby’s other ‘Curiosity Without Judgement’ (Curiosity Without Judgement is a key guiding principle of the MamaBake MamaFesto) Interviews:
Other feature article reads, here.