[baddmammajamma]

Hi Fellow Mums of Primary School Aged Kids:

(This note used to pinned atop the consolidated "School Aged Children" board, before the board was segmented into ages 5-8 and 8-18. It can still be found on the 8-18 year old board, but I hope it can also be pinned here. Early primary school is a very common time for the signs of ASD to really come to the forefront).

In the past, I have posted related notes on the other kids & toddlers boards and have shared the information below in various forms on EB. I am trying to raise awareness of the warning signs of autism spectrum disorders (ASD), which are now Australia's most common set of developmental disorders. Now that another school year is underway, it's a good time to remind parents of what some of the potential flags are in school aged children.

If you click on the link in my signature, you can see why I am particularly passionate about raising awareness of ASD.

ASD can be tricky to detect sometimes because there is no set profile for what autism looks like. It's called a spectrum precisely because the blend of symptoms, and the degree to which they affect a person, can vary dramatically. What people with ASD share are (varying degrees of): (1) difficulties in social interaction, (2) difficulties with communication, (3) restricted/repetitive interests and behaviors. Almost always, they show some sensory sensitivities as well.

Signs of possible ASD in school-aged children
It is not uncommon for ASD to go undetected until school age, especially with kids who have higher functioning forms of ASD (like Asperger's) For instance, ASD can be masked by giftedness. Or parents might mistake ASD for mere "quirkiness" or social awkwardness, while not fully recognizing the degree to which their child is struggling. Here are some of the more common ways that ASD might present itself in a school aged child (this list is representative, not exhaustive, and it's important to remember that not every child with ASD will show every sign):

Communications
Your 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.

Social
Your child may:
* not be interested in playing with other children;
* try inappropriately to join in with other children's play (for example, your 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;
* not like people coming into their personal space or being hurried.

Interests and behaviors
Your 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:
You child may:
* have unusual skills (for example, have a very good memory or be gifted in math or music); or
might 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. 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 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.

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
If you have concerns that your child might have ASD, the next step should be getting professional guidance. Talking to your GP can be a good place to start (and to get a referral to a specialist), but also be aware that not all GPs are up-to-speed on ASD. All the more reason for you to arm yourself with good information!

In younger children, the diagnosis process almost always involves a medical doctor (paed, developmental paed, or psychiatrist) or a panel approach that includes a medical doctor. For school aged children, it is not uncommon for psychologists to drive the assessment/diagnosis process (but be aware that several states require a medical doctor to be involved in order to get an educational diagnosis that will be recognized by the schools).

There are some terrific resources to help guide parents. Two particularly valuable ones in Australia are:

http://raisingchildren.net.au/children_wit...sm_landing.html

http://www.autismawareness.com.au/ (includes state-by-state directory of professionals who are well versed in ASD)

Additionally, the mums who are active on the Special Needs/Disabilities board are very supportive and happy to share recommendations of great "ASD-savvy" professionals (via PM, because we aren't allowed to make explicit recommendations on the board), provide information, or answer questions. Your child doesn't have to have a diagnosis of anything for you to voice your concerns or ask questions.

(I am in Sydney and am always happy to pass along my suggestions of ASD professionals in this area).

Thanks for reading this far!

This post has been edited by baddmammajamma: 23/04/2013, 06:50 AM

[hoohoobump]

Great information as always. I think my six-year-old self may have ticked many of those girl criteria and may have benefitted from some intervention.

[soontobegran]

You're a good sort BMJ. That is terrific information you've taken the time to give there!

[reng]

My mother fits most of these categories. At 62 she often still behaves like a toddler, and really really struggles to 'see' other people's emotions. Reading things like this is really helpful for me - to understand why she behaves like she does, and to help implement strategies so that we can all live with her in some sort of peace!

But regardless, she is a talented artist and pianist. She finished a university degree in science. She is still married after 30-something years (Dad is a rather vacant academic which might be why it works!). She had 4 children and none of us have any major issues (unless you count the one that joined a religious cult). (She didn't really cope well with having children, and only had that many to get a boy, a whole other story and one which didn't happen. But we all turned out ok).

And she grew before autism/ASD was an openly discussed topic. She no longer rocks herself in the corner of her bedroom (something she did as a kid), but she still struggles with eye contact and social interaction.

[baddmammajamma]

Thanks for the kind words. I've lost count of the EBers who have been compelled to get their child assessed after reading a note by me or another "ASD parent." So grassroots outreach on EB does have value.

reng, I have some friends who have been diagnosed as adults after having an "a ha" moment when their own children (or grandchildren!) were being assessed!

I don't have much knowledge about adults with ASD, but there are some EBers (with ASD themselves, are with a partner who has ASD, and/or have parents or siblings with ASD) who are really tuned in to resources, support groups, etc.

[TiredbutHappy]

It's the 23rd of Dec and you're still taking time out to help others when everyone is running around frantically. Merry Christmas to you BMJ. Some seriously good karma must on it's way to you.

[brazen]

oh reng, it really breaks my heart to think of adults who grew up pre-aspergers days, they must have been so misunderstood in so many ways.

after ryan's diagnosis we were able to see ASD traits in virtually every adult member of the family on both sides

[LambChop]

Great post BMJ, I reckon 5-7 is when parents really start to notice the difference because development of self awareness in relation to peers starts to be expected, and this is an area that can be really bewildering for kids on the spectrum. Hopefully if there are parents out there reflecting on their year they'll see this post and potentially go see someone.

Wish stuff like this had been around when we were going through diagnosis.

[2 Gorgeous Girls]

These are genuine questions so I hope it doesn't come across the wrong way.

When you have a gifted child who is "quirky" how do you tell if it's something more? What's the difference between not being able to relate well to other children because they are not on the same intellectual level and it being because of ASD. Is it not possible that they seek out older children because they have more in common?

Any time I've mentioned that I'm worried about my 6 year old I'm always told it's just because she's smart and that I'm looking for problems. Yet she ticks everything in that girls' list except the speech therapy. But then is it a case of it being like star signs where it's so generic everyone will find something that relates?

Also if you have a child that is highly functioning but has ASD traits is there any benefit to a label? It seems like an exhaustive and cost prohibitive process. What happens if you can't afford all the intensive therapies when all is said and done?

If I was ever to go to my GP I doubt he would take me seriously. He only ever want to talk about how smart she is and if I ever have any behavioural concerns it's always because she has had "a harder childhood than most" (multiple hospital admissions)

[baddmammajamma]

I don't take offense at your question at all -- I think it's a really good one.

For what it's worth, I have a daughter who has a massive IQ and has ASD. And yes, sometimes it's not crystal clear what the drivers of her quirks and challenging behaviors are. At the same time, there is something clearly different about a child with is Twice Exceptional (gifted with SNs or learning disabilities) and a child who is gifted.

For us, having the 2e "label" has meant several things: formal recognition by the school that she needs a tailored program that caters to both her intellectual abilities and takes into account her social/emotional challenges, support from other parents and educators/professionals in the 2e space (not feeling like I am the only parent in the world who is dealing with this combination of gifts & deficits), and most importantly, a better understanding of my daugther's unique wiring.

This might just be my own perception and also a vast generalization, but when your child receives a diagnosis of ASD, you sit up and take notice! You are almost forced to take action -- be it formal therapies (OT, social group, etc.) or more informal ways of skill building. In contrast, if you think you're child is simply "gifted quirky," you might not feel the same sense of urgency in pursuing various therapies or programs.

Because my daughter was dx'ed with ASD at a relatively young age, we've also been able to take advantage of some of the government funding (the bulk of which is available for kids who are dx'ed before the age of 6) and early intervention. Having said that, there still are various forms of funding and support (subsidized sessions with OTs, speech therapists, psychologists, for instance....the Carer's allowance, etc.) available for school aged kids who are diagnosed, and early intervention is not the only way for a child to hone their "tool kit."

If your child has quirks and behaviors that impact her daily living and/or happiness, then my strong advice for you to consider a comprehensive developmental assessment (ideally by a psychologist or developmental paed who has experience with gifted kids/kids with ASD -- and yes, they do exist!) Under a Mental Health Care Plan (that your GP would prepare), you would be able to claim some of the costs of a psychologist. Just google to see what it covers. Of course, that would require that you actually HAVE the support of your GP. You might want to consider seeing one who would take any concerns you have more seriously. I imagine it's very frustrating to be told that ALL of your daughter's behaviors are due to her IQ and past health issues.

Good luck. There are a fair number of 2e mums on EB. We tend to congregate on the Gifted & Talented thread.