What One Proud Mamma Wants You To Know About Autism

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Dear Friends:

April 2nd is the U.N-declared World Autism Awareness Day, and very significantly, April is Autism Acceptance Month, a movement that is powered by the autistic community. These efforts are especially near and dear to my heart thanks to one beautifully quirky 8 ½ -year-old girl — my amazing “Aspergirl,” Juliet (pictured in her favorite AC/DC outfit at age 3, when she was formally diagnosed with an autism spectrum disorder).

Many of you have followed our family’s journey over the years, so you appreciate that every single day is about autism awareness and acceptance for us. I am so grateful for your support and hope you will continue to back this “Mamma On A Mission” by taking a few moments to (re)read this post and then passing it along to your friends and family.

One of my prime motivations for being so open about our family’s experiences is to help other parents recognize some of the most common signs of ASD and to encourage them to follow  “When in doubt, check it out” if they have concerns about their child’s development. At the same time, I am equally passionate about putting a human face on a condition that is too often plagued by harmful stereotypes and misinformation. But first…a refresher on the basics:

Autism spectrum disorder (ASD) is a lifelong, neurodevelopmental condition that is characterized by:

  • Differences in communication and social interaction (use of verbal and non-verbal communication; relating to other people and sharing emotions)
  • Restricted, repetitive patterns of behavior, interests or activities

Quite often, people on the autism spectrum also have significant sensory sensitivities (hypo and/or hyper sensitive).

Autistic educator and advocate Nick Walker explains autism in a much richer way:

Autism produces distinctive, atypical ways of thinking, moving, interaction, and sensory and cognitive processing. One analogy that has often been made is that autistic individuals have a different neurological “operating system” than non-autistic individuals.  

[His full, thought-provoking definition can be found here].

A diagnosis of ASD now includes several conditions that used to be diagnosed separately: Autistic Disorder, Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), and Asperger’s Syndrome. These conditions are now under one umbrella term, called autism spectrum disorder (ASD, or sometimes just referred to as “autism”). It’s called an autism spectrum precisely because the blend of symptoms, and the degree to which they affect a person, can vary dramatically.

The very latest figures from the U.S. indicate that 1 in every 68 children has been identified as having autism.  Although the exact causes of autism are not certain, many experts believe that increased awareness in identifying and properly diagnosing children is significantly contributing to the rising rates. Autism can sometimes be detected by 18 months, or even before. By age 2, a diagnosis by an experienced specialist can be considered very reliable. However, many children are not formally diagnosed until much older, with some people not diagnosed until adulthood.

Just as every child on the autism spectrum is very different, every family’s experience with autism will vary. Although I cannot speak for every parent, I can share something that seems to be a very common thread for many of us with kids on the spectrum: the emotional journey of coming to terms with a new reality that includes autism.

When I first started worrying about Juliet’s development, as she was nearing her first birthday, autism was nowhere on my radar screen.  What little knowledge I did have of autism was based on having seen the movie “Rainman.” Sure, Juliet had some unusual interests, behaviors, and sensitivities, but she seemed to be a happy baby who engaged with me and Sean. She even made eye contact! Why on earth would we need to be worried about autism?!

In hindsight, Juliet actually showed several early warning signs of autism as a baby and young toddler, but we failed to recognize them as such. I had niggling worries that her development was atypical, but no one around me seemed to share my concerns.

Sean thought I was overreacting in stereotypical first-time mother fashion. “She’s fine. She’s just not an extrovert like you.” Well-intentioned friends and family comforted me with: “Don’t worry. All kids develop at their own pace..”  “She’s probably a genius. Einstein didn’t speak ‘till he was four…”  and “Of course she’s different, just look at her mom!”

Likewise, our pediatrician wasn’t overly concerned by the fixations, the sensory issues, and the lack of interest in other kids. “A lot of parents would love to have a quiet 2-year-old who can read! ” A few loved ones apparently did have concerns, but they were hesitant to say anything for fear of freaking me out. I clung to these reassurances as the reason not to probe my concerns any further.

Finally, two very brave friends approached me and suggested that we have Juliet assessed for autism by a specialist. It was the very first time that anyone had even suggested  that she might be on the spectrum, and as I read more about autism, the more I saw reflections of Juliet.

The lead up to Juliet’s assessment was an extremely stressful time for us, especially since we also had a newborn baby at home. Sean was in denial about Juliet’s challenges and was very reluctant to have her formally assessed, while I fretted about burdening her with a “label” at such a young age. Little did we know that these are both very common reactions.

Receiving Juliet’s diagnosis – a provisional one at 28 months and then her formal diagnosis at age 3 — ended up being a blessing for our entire family, as Sean and I suddenly realized “Wow, this is REAL.”  She was still the same kid we loved unconditionally, but now we had even greater insights into how she was processing and experiencing the world.

Early detection led us to quality early intervention, which can be so critical in providing opportunities for skill building. Juliet benefited from 2 ½ years of outstanding early intervention before she started school. She blossomed during that time, and we are fortunate that we still have some wonderful professionals guiding us. Many equally deserving families don’t have this type of support and are doing the best they can with limited resources. It is a travesty that — in many states and countries — timely intervention and support services for autistic people are so often tied to their family’s ability to pay the steep price tags, if services exist at all!

Juliet’s diagnosis also drove us to search very hard for a school with a strong track record of inclusion, personal care, and familiarity with autism (when one popular local school indicated “Oh, we don’t have any children like THAT here,” we quickly crossed them off our list!)  We also have the benefit of a fabulous network of autistic adults and fellow parents of autistic children who continue to be a major source of friendship, information, and inspiration.

It has been nearly 6 ½ years since we took our first hesitant steps into the world of autism. Back then, I struggled to see past the term “lifelong disability.” I didn’t want my daughter to be different. Over the years, we’ve come to accept and embrace autism as a central part of Juliet’s identity and as an important part of our family’s fabric. Even though it’s still very tough to watch her struggle with things that come so naturally to most other kids, and even though some people will still make assumptions about her based on stereotypes and misinformation, our primary focus these days is on encouraging Juliet’s passions and nurturing her strengths.

The world needs people who see and process things through an unconventional lens, and our job as Juliet’s parents is to make sure that she has the confidence and core skills she needs to shine on her own terms.  Different does not mean defective, and I will proudly convey that message to anyone who will listen!

If any of you has concerns about your own child’s development — be it suspected autism or something else — I hope that our story provides a gentle push to take action. There is nothing to lose and potentially so much to gain in terms of better understanding and supporting your child.

And to everyone who has taken time today to read and reflect upon this note, thank you. There are some terrific links and information below for anyone who wishes to learn more.

With gratitude,

Kristen

***

COMMON SIGNS OF ASD IN CHILDREN

Early Signs of ASD in Babies/Toddlers:

Some early signs of autism spectrum disorder (ASD) – usually seen in the first two years – are listed below. Some children will have many of these early warning signs, whereas others might have only a few. Some behavior signs can change over time, or become clearer as the child gets older. Also, any loss of social or language skills during this period is cause for concern. The number of signs in each category varies according to the age of the child and how severely the child is affected.

Social communication red flags

The child:

  • doesn’t point to or hold up objects to show people things, share an experience or show that she wants something – for example, she doesn’t point to a dog and look back at you to make sure you’ve seen it too, or she’ll drop a toy in your lap and walk away instead of holding it up and looking at you
  • doesn’t use eye contact to get someone’s attention – for example, she doesn’t look at a parent then at a snack to show she wants it
  • doesn’t consistently respond to her name
  • doesn’t smile at caregivers without first being smiled at or tickled
  • doesn’t use gestures on her own – for example, she doesn’t wave bye-bye without being told to, or without copying someone else who is waving
  • doesn’t show interest in other children
  • doesn’t start games such as peekaboo or patty cake
  • doesn’t engage in pretend play – for example, she doesn’t feed her teddy bear
  • doesn’t sound like she’s having a conversation with you when she babbles
  • doesn’t understand simple one-step instructions – for example, `Give the block to me’, or `Show me the dog’
  • copies what she hears from others or from the TV – for example, when you ask if she wants more drink, she echoes back `more drink’.

Behavioral red flags

The child:

  • has an intense interest in certain objects and becomes ‘stuck’ on particular toys or objects – for example, he will flick the light switch off and on repeatedly, or will play only with cars
  • interacts with toys and objects in one particular way, rather than more broadly or in the way they were intended to be played with – for example, turning the wheels of a toy car or lining up objects
  • is very interested in unusual objects or activities – for example, drains, metal objects, or watching a specific ad on TV
  • focuses narrowly on objects and activities, such as turning the wheels of a toy car or lining up objects
  • is easily upset by change and must follow routines – for example, sleeping, feeding or leaving the house must be done in the same way every time
  • repeats body movements or has unusual body movements, such as back-arching, hand-flapping and walking on his toes
  • is extremely sensitive to sensory experiences – for example, is easily upset by certain sounds, or will eat only foods with a certain texture
  • seeks sensory stimulation – for example, rubs objects on his mouth, or face, or seeks vibrating objects like washing machines, or flutters his fingers to the side of his eyes to watch the light flicker.

Source: Raising Children Network

Check out:

  • The Kennedy Krieger Institute in Baltimore has put together an outstanding 9-minute video tutorial on ASD behavioral signs in one-year-olds. The tutorial consists of six video clips comparing toddlers who show no signs of ASD to toddlers who show early signs of ASD.
  • Likewise, the leading edge UC San Diego’s Center for Autism Excellence has some very valuable information about early detection and screening.

Common Signs Of ASD In Preschoolers 

With some children, the red flags might not become entirely obvious until they reach preschool (or even school age), when suddenly the developmental gap between them and their peers becomes more pronounced. In addition to the signs above, here are some of the more common ways ASD might present itself in a preschool-aged child. Please note that this list is simply representative, not exhaustive, and that a child with ASD won’t necessarily show every sign.

Social communication red flags:

  • The child generally does not point to or share observations or experiences with others.
  • The child tends not to look directly at other people in a social way. This is sometimes referred to as a lack of eye contact.
  • There may be an absence of speech, or unusual speech patterns such as repeating words and phrases (echolalia), failure to use ‘I’, ‘me’, and ‘you’, or reversal of these pronouns.
  • Unusual responses to other people. A child may show no desire to be cuddled, have a strong preference for familiar people and may appear to treat people as objects rather than a source of comfort.
  • The child may appear to avoid social situations, preferring to be alone.
  • There is limited development of play activities, particularly imaginative play.
  • There may be constant crying or there may be an unusual absence of crying.

Behavioral red flags:

  • The child often has marked repetitive movements, such as hand-shaking or flapping, prolonged rocking or spinning of objects.
  • Many children develop an obsessive interest in certain toys or objects while ignoring other things.
  • The child may have extreme resistance to change in routines and/or their environment.
  • The child may have sleeping problems.
  • The child may be resistant to solid foods or may not accept a variety of foods in their diet.
  • There are often difficulties with toilet training.
  • The child may be extremely distressed by certain noises and/or busy public places such as shopping centers.

Source: Autism Victoria (now AMAZE)


Common Signs Of ASD In Older Children and Teenagers

It is not entirely uncommon for ASD to go undetected until school age, when a child’s struggles and differences from peers become much more apparent. ASD can also be masked by giftedness, as it initially was in our daughter, or blurred by other conditions, such as ADHD. Below are some of the most common social communication and behavioral signs of autism spectrum disorder (ASD) in school age children.

Social communication signs of ASD

Older children and teenagers with autism spectrum disorder (ASD) typically have trouble with both verbal and non-verbal communication for social purposes. An older child or teenager with ASD might:

  • have trouble when taking turns in conversations – for example, she might like to do all the talking or find it hard to answer questions about herself
  • talk a lot about a favorite topic, but find it difficult to talk about a range of topics
  • be confused by language and take things literally – for example, she might be confused by the expression ‘Pull your socks up!’ and actually pull up her socks
  • have an unusual tone of voice, or use speech in an unusual way – for example, she might speak in a monotone or with an accent
  • have a very good vocabulary and talk in a formal, old-fashioned way
  • find it hard to follow a set of instructions with more than one or two steps
  • have trouble reading non-verbal cues, such as body language or tone of voice, to guess how someone else might be feeling – for example, she might not understand when an adult is angry based on tone of voice or gestures
  • use eye contact in an unusual way – for example, she might make less eye contact than others, or not use eye contact when she’s spoken to
  • express few emotions on her face, or not be able to read other people’s facial expressions
  • uses very few gestures to express herself
  • prefer to spend time on her own, rather than with friends
  • need other children to play by her rules
  • have trouble understanding the social rules of friendship
  • have few or no real friends
  • have trouble relating to children her own age, and might prefer to play with younger children or adults
  • have difficulty adjusting her behavior in different social situations.

Behavioral signs of ASD

There are some behavioral signs that a child or teenager might have autism spectrum disorder (ASD). For example, the child might:

  • have unusual interests or obsessions – for example, he might collect sticks or memorize the train timetable
  • have compulsive behaviors – for example, he might line things up or have to close all the doors in the house
  • be unusually sensitive and get upset easily
  • have an unusual attachment to objects – for example, he might carry a toy around as a teenager, or collect unusual items like potato chip packets or shoelaces
  • be easily upset by change and like to follow routines – for example, he might like to sit in the same seat for every meal or have a special order for getting ready in the morning
  • repeat body movements or have unusual body movements, such as hand-flapping or rocking
  • make repetitive noises – for example, grunts, throat-clearing or squealing
  • be sensitive to sensory experiences – for example, he might be easily upset by certain sounds, or will eat only foods with a certain texture
  • seek sensory stimulation – for example, he might like deep pressure, seek vibrating objects like the washing machine or flutter fingers to the side of his eyes to watch the light flicker.

Other signs of ASD

Older children and teenagers with autism spectrum disorder (ASD) often have other difficulties as well, which might include:

  • difficulty with sleep – for example, they might have difficulty falling asleep, or might regularly wake up at 4 am
  • anxiety or feeling overwhelmed – for example, they might feel anxious about going to a new place, or in social situations
  • depression – older children and teenagers who are aware of their differences are also often aware of how others see them and can feel like outsiders. These feelings might be intensified by changing hormone levels during puberty
  • aggressive behaviour – they often have sensory sensitivities that can lead to sudden aggressive behavior. They might have difficulty understanding what’s going on around them, which can lead to frustration building up
  • eating disorders – for example, they might have difficulty moving to middle/high school and might develop an eating disorder to cope with feelings of anxiety
  • school refusal or not wanting to go to school – they might feel overwhelmed or confused at school.

Source: Raising Children Network

An Extra Twist: Girls & Autism

Adding an extra wrinkle to the warning signs above is the tendency of girls on the autism spectrum to present differently than boys, even if the underlying symptoms are still similar. Sue Larkey, an autism educator in Australia, has written a terrific summary of the key ways in which autism tends to “look” different in girls than in boys (again, bearing in mind that these are generalizations):

Ten Ways Girls With ASD Differ To Boys With ASD

1. Their special interests are usually animals, music, art, literature.

2. They often have a very good imagination, which includes imaginary friends, games, being animals or taking on persona of other girls.

3. They often see speech therapists for their speech and may be diagnosed with specific language disorders however there is something different about this girl no one can quite put their finger on.

4. They often play with older children or much younger children. This play is sometimes unusual for example ‘Mums and Dads’ but she will want to play the same role and game every time. She usually wants to be the pet or baby, whereas most girls want to be the Mum or Dad.

5. They often have hyperlexia – the ability to read but comprehension does not always match their reading skills. They are often the class book worm or write stories but they write the same story over and over changing a few characters. Many have a special interest in literature.

6. They have unusual sensory processing, like the boys, however bigger fluctuations often going from one extreme to the other.

7. They get anxious like boys, however their anxiety is rarely physical or disruptive. In fact many have great copying mechanisms at school however the family see a very different child at home where the anxiety can explode.

8. Often their difficulties with social skills are called ‘shy’, ‘quiet’, ‘solitary’.

9. They often like to organize and arrange objects. I watched one little girl spend hours seemingly playing “My Little Ponies” however on closer examination she was just arranging and re-arranging the horses over and over.

10. The main difference is there are MANY more undiagnosed girls/women than boys/men. Currently we only diagnose 1 girl to 7 boys. In the future it is thought by many psychologists the ratio could be more like 5 to 7 as we become more aware of this group.

Thankfully, there is a growing body of research on and support for girls & women on the spectrum, as well as professionals who are specializing in this space.

Check out:

Yet Another Twist: Gifted + ASD (“Twice Exceptional/2e”)

Giftedness and ASD are not mutually exclusive — they can and do exist together in some individuals! In fact, giftedness can mask some symptoms of autism, and autism can hide some indicators of giftedness. The common term for someone who is gifted and has learning differences or learning disabilities is  “twice exceptional” (2e). It is important to remember that IQ/cognitive testing provides only one slice of a child’s developmental profile and by itself cannot rule in or rule out autism  A comprehensive assessment by a qualified specialist — ideally someone who has rich experience with twice exceptional profiles and will use gold standard assessment tools — is the best way to determine if a child has something “more than giftedness” in play.

Check out:

WHAT TO DO IF YOU HAVE CONCERNS ABOUT AUTISM

If you or your pediatrician/GP have concerns that your child might have ASD, the next step should be getting an assessment by a specialist or multi-disciplinary panel. As the developmental pediatrician (now retired) who diagnosed Juliet was fond of saying. “No child was ever harmed by an assessment or early intervention, but plenty of children could benefit from receiving timely support.” 

To reduce the risk of misdiagnosis or of a missed diagnosis, consider seeing a specialist with autism expertise (e.g. developmental pediatrician and/or child psychiatrist or child psychologist who focuses on autism) who uses gold standard assessment tools. These professionals often have long waiting lists, which is all the more reason for parents to get the process started as soon as they start to have concerns.

FAVORITE ON LINE RESOURCES

Here are a few of my favorite resources for people who want to learn more:

Websites:

The Thinking Person’s Guide To Autism: One of the finest autism-related blogs in the universe, filled with thoughtful, evidence-based information. Geared toward people on the autism spectrum, their families,  professionals, and anyone who wants to learn more.

A Diary Of A Mom: My favorite “Mom-blog” on the internet. Jess, the mother of two girls, provides and inspiring and truthful view of proudly parenting an autistic child.

Emma’s Hope Book:  Along with A Diary Of A Mom, this site is not to be missed. Mom Ariane and her insightful, amazing autistic daughter Emma write pieces that will stay with you.

Autism Self Advocacy Network:    ASAN is a nonprofit organization run by and for Autistic people, with the dual mission of providing support and services support to individuals on the autism spectrum while also working to educate communities and improve public perceptions of autism.

John Elder Robison: Blog of the world famous author, advocate, and Aspergian, John is the single best public speaker on autism who I have ever had the privilege of meeting.

First Signs: A fabulous site that educates parents, doctors, and other care givers about the earliest sign of potential developmental needs and importance of early intervention.

Tony Attwood: The official web site of the world famous authority on Asperger’s Syndrome, Brisbane-based Tony Attwood. Of particular interest to me is the section on girls & women with Asperger’s.

Raising Children Network: An Australia-based comprehensive site the covers how to go about seeking a diagnosis, considering various forms of early intervention, etc.

Autism Awareness: Founded by a group of fellow parents in 2007, it has now grown into one of Australia’s largest autism education and advocacy groups.

The National Autistic Society: U.K.-based site devoted to raising awareness and providing guidance on ASD. Site also contains some good information on girls/women with ASD.

Facebook Pages:

Thinking Person’s Guide To Autism: Facebook companion to the excellent web site above.

Autism Discussion Page: Great site by Bill Nason, MS, LLP, to share tools that help children on the spectrum “feel safe, accepted and competent.”

Autistic Hoya: Very thought provoking site by Georgetown student Lydia Brown, an Autistic and multiply-disabled disability rights activist, scholar, and writer.

Stuart Duncan – Autism From A Father’s Point Of View: Wonderful to read the often under-represented views of “ASD Dads.”

**Additional fabulous resources (including some of the above) can be found on The Thinking Person’s Guide To Autism Resource Page **