More Than Just “Quirks”…What One ASD Mamma Wants You To Know About Autism (2013 Update)

1 Apr

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, 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 7 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, 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 read this post and then passing it along to your friends/family who have young children. But please don’t limit your outreach to the month of April - this information is just as relevant in October,  January, or any other time of year!

One of my prime 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 harmful 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  “If 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 lifelong, neurodevelopmental conditions that are characterized by:

  • Differences in communication – both verbal (understanding & using spoken language) and non-verbal (e.g. pointing, body language)
  • Differences in social interactions (relating to other people and sharing emotions)
  • Routines and repetitive behaviors

Quite often, people with ASD also have significant 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.

Note: In a move that has generated deep concern by some and praise by others, the American Psychiatric Association’s newest diagnostic manual (DSM-V, “The Psychiatrist’s Bible”), which goes into effect in May 2013, will do away with these individual sub-categories and instead will use one blanket term ”Autism Spectrum Disorder,” with some changes to the combination of symptoms required to formally meet the criteria for a diagnosis of ASD.

The 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 undetected for years, especially in mildy affected and/or gifted children or 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 we 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 even suggested  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, grief, and guilt. 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 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 benefited 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 major source of friendship, information, and inspiration over the years.

When we first started out on our autism 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. Although ASD alone does not define Juliet, it is central to who she is, and we are proud to embrace it — as is she. 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,

Kristen

***

RED FLAGS FOR ASD IN CHILDREN

Early Warning Signs In Babies/Toddlers:

Below are some of the most common early warning signs – usually seen in the first 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.

 Social

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.

 Communications

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’.

Behavior

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.

Sensory

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 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.
  • 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 entirely uncommon for ASD to go undetected until school age, especially with kids who are “higher functioning” (including those with Asperger’s Syndrome). ASD can also be masked by giftedness, as it initially was in our daughter, or blurred by other conditions, like ADHD. 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):

Social

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.

Communications

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. 

Behavior

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.

An Extra 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 ASD educator in Australia, 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 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.

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.

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 ASD, and ASD 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 ASD.  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.

WHAT TO DO IF YOU HAVE CONCERNS ABOUT ASD 

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.” 

One cautionary note: As so many of my friends & I have discovered the hard way, not every health care professional understands ASD well. Any professional who is willing to rule in or rule out something as significant as ASD with only a cursory check (“Oh, he can’t be autistic, he makes eye contact!” or “She must be autistic, she doesn’t make eye contact!”) or dismisses your concerns all together is probably not the right professional.

To reduce the risk of misdiagnosis or a missed diagnosis, consider seeing a specialist with ASD 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.

P.S: Parents of kids with ASD often have great recommendations for specialists and valuable tips for “navigating the system.” Please leverage our knowledge!

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 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.

First Signs:A fabulous site that educates parents, doctors, and other care givers about the earliest warning signs 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 in 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 ASD parents in 2007, 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.

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.”

Susan Senator – Not All Happy Families Are Alike: Terrific site by the mother of three, including oldest son who is severely autistic.

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

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20 Responses to “More Than Just “Quirks”…What One ASD Mamma Wants You To Know About Autism (2013 Update)”

  1. Chestnut April 1, 2013 at 7:22 am #

    Reblogged this on Just Me & My Interactions.

  2. Chestnut April 1, 2013 at 7:58 am #

    Hi Kristen thanks for sharing, I’ve reposted on my blog and on my twitter. Emma

  3. Belinda April 1, 2013 at 8:10 am #

    Kristen,

    As usual I am in awe of everything you do for ASD awareness. Thanks for fighting the good fight!

    B

  4. Gail Gislason April 1, 2013 at 12:41 pm #

    Happy to pass this on to friends & family, Kristen. You are a truly dedicated Mom

    • Mariam Marx April 1, 2013 at 5:45 pm #

      Juliet looks adorable!…Keep the mission going Kristen. Thank you for sharing. What a wonderful thing you’re doing educating many of us about ASD!

  5. EvieMeenyMineyMo April 1, 2013 at 4:56 pm #

    Reblogged <3

  6. marlene April 1, 2013 at 9:01 pm #

    Have posted it on Facebook and asked for it to be shared after reading it. Such an informative article and worth reading! You’re an amazing and inspirational friend.

  7. Linda April 1, 2013 at 9:52 pm #

    Thankyou for posting! When our cub scout leader asked me last week had I considered that my son may have Aspergers, I wasn’t shocked. It has been on my mind for sometime and your article has led me to some fantastic resources that have answered a lot of questions. Your attitude to ASD inspiring and I now feel that I can face up to this possibility rather than deny it. Thankyou :)

  8. Lynda April 1, 2013 at 10:48 pm #

    Shared for my special grandson xox

  9. ghostbusterbev April 2, 2013 at 2:11 am #

    Thanks for enlightening us with this information and for your efforts to keep autism out in the world where it belongs.

  10. Sarah Deabler April 2, 2013 at 3:46 am #

    Kristen, I will surely share this informative article in hopes that your sentiments take hold everywhere.

  11. Betsy St. John April 2, 2013 at 12:00 pm #

    One early clue, before we knew about all this, was no interest in taking the bottle (due to oral sensory issues). I knew then (way before 12 months of age) that something was “off”.

  12. MMulhollandFrance April 2, 2013 at 1:35 pm #

    Kristen – found you via our mutual friend – Scott Cory. Great post & blog – thank you!

  13. Laurie April 3, 2013 at 2:22 am #

    Kristen…I shared this. As an educator who has had ASD students in my class, I sooooo appreciate you and your love :0)

  14. Pav April 3, 2013 at 12:24 pm #

    Shared on FB :) You’re an amazing mum, and both your kids are so lucky to have you and Sean :D xx

  15. Lorraine April 4, 2013 at 11:00 am #

    Great post! A really good summary of information, without scare tactics or misinformation. Cheers from another mom of a beloved child with ASD

  16. Susan Rossien April 4, 2013 at 1:14 pm #

    Thank you for all of your information. I have an almost 12 year old girl who has never been formally diagnosed. I have had her tested and re tested and finally stopped trying to get an answer and just helped her as much as possible with social and sensory issues. She is also gifted and happy. She is in a social skills group. It has been a frustrating and confusing journey. I am only recently being able to relax and believe that things will work out.

  17. Christina April 17, 2013 at 2:23 pm #

    This is amazing. I’m in the process of getting my 4 1/2 year old assessed right now. He didn’t have any huge red flags as a toddler, and like you, people in my life dismissed the little things I noticed. Since he started preschool this year I’ve been more and more concerned. This was really informative and reassuring. Thank you!

  18. Sarah July 10, 2013 at 4:58 pm #

    This is a great post, I wish I’d found it sooner! My son (5years) has just been diagnosed with ASD, and being new to this, and new to Australia, we’re finding it all a bit daunting!

  19. Kelly Kraus July 29, 2013 at 11:56 am #

    Kristen, our family’s journey mirrors yours, just 15 years in between. Our son Karl was diagnosed with Aspergers at the same age (i was working at McK Atlanta during his entire childhood) and he too received fabulous early intervention and support from our county’s public school system, with social skills as the key focus (he was in public school his entire career). He graduated with honors from high school and is starting his sophomore year in college (he adjusted to college extremely well, earning a 4.0 in his first semester). He is driving (delayed a year in getting his license) and living at home. We did talk with Karl openly when he got older about who he is, and we found that it helped him adjust even better. But that is an individual decision for every child. I also shared a very simple summary for his teachers every year titled “Getting to Know Karl”, which covered the same points as in your blog. The teachers knew that we as parents were a team with them in making Karl successful. That was the key, I think. Keep doing what you’re doing.

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