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Monday, 2 April 2012

April 2 - Autism Awareness Day - Reposted with permission

Autism Awareness: What One “ASD Mamma” Wants You To Know

This is what autism looks like! Juliet at age 3, shortly after diagnosis.
Dear Friends: April 2nd is the U.N-declared World Autism Awareness Day, a cause that is near and dear to my heart thanks to one beautifully quirky 6 ½ -year-old girl — my amazing daughter, Juliet (pictured at age 3, when she was formally diagnosed with ASD).
Many of you have followed our family’s journey on the autism spectrum over the years, and I am so grateful for your support of my efforts to raise awareness of ASD. I hope you will continue to back this “Mamma On A Mission” by taking a few moments to read this post and then passing it along to your friends/family who have young children. The entire month of April is dedicated to Autism Awareness & Acceptance, so you have some time!  
One of my motivations for being so open about our family’s experiences is to help put a human face on a condition that is often plagued by stereotypes and misinformation. At the same time, I am particularly passionate about helping other parents recognize some of the most common red flags for ASD and encouraging them to follow “When in doubt, check it out”  if they have any concerns about their child’s development.
But first…a quick refresher on the basics:
Autism spectrum disorders (ASDs) are neurodevelopmental disorders characterized by:
  • Delays or differences in communication – both verbal (understanding & using spoken language) and non-verbal (e.g. pointing, smiling)
  • Differences in social interactions (relating to other people and sharing emotions)
  • Routines and repetitive behaviors  
Quite often, people with ASD also have sensory sensitivities.
The autism spectrum includes Autistic Disorder (“classic autism”),Asperger’s Syndrome, and the awkwardly titled Pervasive Developmental Disorder-Not Otherwise Specified (“PDD-NOS”), which is diagnosed when the full set of criteria for either autism or Asperger’s syndrome is not met. Sometimes the term “autism” is used to refer to all ASDs.
The very latest figures from the U.S. indicate that 1 in every 88 children — 1 in every 54 boys — has been identified as having an autism spectrum disorder.  ASD is now the most common developmental disorder in my adopted country of Australia . If you don’t have a loved one with ASD in your own family, I can guarantee that your children have schoolmates on the spectrum. They will likely have friends on the spectrum. They will work with people on the spectrum. And, someday, they might even have a partner or a child on the spectrum. ASD is that common.
It’s called a spectrum precisely because the blend of symptoms, and the degree to which they affect a person, can vary dramatically. Symptoms may go unrecognized, especially in mildy affected and/or gifted children or when more debilitating conditions mask them.
Just as every child with ASD is very different, every family’s experience with ASD is different. I can’t profess to know what it’s like to parent a child who is severely affected by autism, but I can share something that seems to be a common thread for all 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, at about 12 months old, autism was nowhere on my radar screen.  What little knowledge I did have was based on having seen the movie “Rainman.” Sure, Juliet had some unusual interests, behaviors, and sensitivities, but she was happy baby who loved to engage with me and Sean. Why would we need to be worried about autism?!
In hindsight, Juliet actually showed several early warning signs of ASD as a baby and young toddler, but I failed to recognize them as such. I had niggling worries that something was amiss, 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”and “Of course she’s a bit different…just look at her mom!”
Likewise, our pediatrician wasn’t overly concerned by the fixations, the sensory issues, and lack of interest in other kids. “A lot of parents would love to have a 2-year-old who can read! Look how well she engages with adults.” A few loved ones 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 ASD by a specialist. It was the very first time that anyone had evensuggested  that Juliet might be at risk, and the more I read about ASD, the more I saw glimmers of Juliet. I was overwhelmed with fear and grief. Meanwhile, Sean remained totally unconvinced that his darling daughter could be on the spectrum (both very common reactions, I later learned). 
The lead up to Juliet’s assessment was a very stressful time for us, but getting her diagnosis (of PDD-NOS) ended up being a blessing for our entire family. Most importantly, it made both me and Sean realize “Wow, this is REAL.” Juliet wasn’t going to magically grow out of it or develop certain skills by osmosis. It was going to take a tremendous amount of hard work – by us and by Juliet – to help her build the core skills she would need to make her way in the world.
Early detection led us to early intervention, which can be so critical in improving outcomes for kids with ASD. Juliet benefitted from 2 ½ years of outstanding, very intense early intervention before she started school. We are extremely fortunate that she responded so well to it and that we still have some terrific 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 people with ASD are so often tied to their family’s ability to pay the steep price tags, if services exist at all!
Juliet’s diagnosis compelled us to search very hard for a school with a strong track record of inclusion and familiarity with ASD (when one popular local school indicated “Oh, we don’t have any children like THAT here,” we quickly crossed them off our list!)  We have also had the privilege of connecting with a large network of ASD families who have been a great source of friendship, information, and inspiration over the years.
When we first started out on our ASD journey, I couldn’t see past the term “lifelong disability.” I didn’t want my child to be different. Over the years, we’ve come to accept autism as just another part of our family’s “normal.” Even though it’s still tough to watch Juliet struggle with things that come so naturally to other kids, and even though some people will still make assumptions about her based on stereotypes and misinformation, our focus these days is on nurturing and celebrating Juliet’s amazing “differing abilities.”
The world needs people who see 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. ASD does not define our daughter, but it is an important part of who she is, and we are proud to embrace it. Now we just want the rest of the world to do the same!
If any of you reading this note has concerns about your own child’s development — be it suspected ASD or some other potential issue — I hope that our story provides a gentle push to take action. There is nothing to lose and potentially so much to gain. Please help me spread that message.
With deepest thanks,
Early Warning Signs In Babies/Toddlers:
Below are some of the most common early warning signs – usually seen in thefirst two years – of ASD. Some children will have many of these early warning signs, whereas others might have only a few. Also, any loss of social or language skills during this period is cause for concern.
The child:
  • doesn’t  consistently respond to her name
  • doesn’t smile at caregivers
  • doesn’t use gestures independently – 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 enjoy or engage in games such as peek-a-boo or patty cake.
The child:
  • doesn’t use gestures to get needs met – for example, she doesn’t raise her arms when she wants to be picked up or reach out to something that she wants
  • doesn’t use eye contact to get someone’s attention or communicate – for example, she doesn’t look at a parent and then look at a snack to indicate she wants the snack
  • doesn’t point to show people things, to share an experience or to request or indicate that she wants something – for example, when she’s being read to, she doesn’t point to pictures in books and look back to show the reader
  • doesn’t engage in pretend play – for example, she doesn’t feed her baby doll
  •  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’.
The child:
  • has an intense interest in certain objects and becomes ‘stuck’ on particular toys or objects
  • 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 toes.
The child:
  • is extremely sensitive to sensory experiences – for example, she is easily upset by certain sounds, or will only eat foods with a certain texture
  • seeks sensory stimulation – for example, she likes deep pressure, seeks vibrating objects like the washing machine, or flutters fingers to the side of her eyes to watch the light flicker.
Signs Of Possible 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 manifest itself in a preschool-aged child. Please note that this list is simply representative, not exhaustive, and that children with ASD won’t necessarily show every sign.
  • 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 patternssuch 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.
  • 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.
Signs Of possible ASD In School-Aged Children
It is not uncommon for ASD to go undetected until school age, especially with kids who are “higher functioning” (incl. those with Asperger’s Syndrome). ASD can also be masked by giftedness, as it initially was in our daughter. Here are some of the more common ways that ASD might present itself in a school aged child (again, list is representative, not exhaustive, and not every child with ASD will show every sign):
The child may:
  • not be interested in playing with other children;
  • try inappropriately to join in with other children’s play (for example, the child might seem aggressive);
  • behave in a way that other people find difficult to understand (for example, they may not do as they are told);
  • be easily overwhelmed by being around other people; or
  • not like people coming into their personal space or being hurried.
The child may:
  • have had unusual language development when they were younger (used language that is different to that used by other children their age);
  • sound unusual when they speak;
  • repeat words or phrases that they have heard rather than responding to them;
  • refer to themselves as “you,” “she” or “he” after the age of three;
  • use unusual words for their age; or
  • use only limited language or talk freely only about things that interest them. 
The child may:
  • struggle to take part in pretend play with other children or play in which they need to cooperate or take turns;
  • have difficulties in large open spaces (for example, they may stay round the edges of the playground);
  • find it hard to cope with changes or situations that aren’t routine, even ones that other children enjoy (for instance, school trips or the teacher being away).
Other factors:
The child may:
  • have unusual skills (for example, have a very good memory or be gifted in math or music); or
  • not like the sound, taste, smell, touch of certain things. 
 A Twist: ASD in Girls
Adding an extra wrinkle to the warning signs above is the tendency of girls with ASD to present differently than boys, even if the underlying symptoms are still similar. Sue Larkey, an Australian expert in ASD, has written a terrific summary of the key ways in which ASD tends to “look” different in girls than in boys (again, bearing in mind that these are generalizations):
Ten Ways Girls with an ASD differ to Boys with an 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 withspecific 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.
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. Please ask  for a referral to a good developmental pediatrician and/or child psychiatrist or child psychologist who focuses on ASD/related issues. As Juliet’s developmental pediatrician is fond of saying. “No child was ever harmed by an assessment or early intervention, but plenty of children could benefit from receiving timely support.” 
There are some terrific resources to help guide families who are starting their own ASD journeys or individuals who just want to learn more. Some of my favorites include: (One of the based ASD-related blogs in the universe, filled with thoughtful, evidence-based information. Geared toward people with autism, their families & professionals working in the ASD space). (The U.S. Center for Disease Control’s latest data – as of March 30, 2012 — and information on the prevalence of autism & terrific information on ASD, early warning signs, early intervention) (educating parents, doctors, and other care givers about the earliest warning signs and importance of early intervention) (the web site of the world famous authority on Asperger’s Syndrome, Brisbane-based Tony Attwood), comprehensive site – Australia based. Covers how to go about seeking a diagnosis, considering various forms of early intervention, etc.) (My favorite non-profit organization. Founded by a group of fellow ASD parents, it has now grown into one of Australia’s largest ASD education and advocacy groups. Site includes an Australian state-by-state directory of professionals who are well versed in ASD)  (U.K. site devoted to raising awareness and providing guidance on ASD)