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What I Would Like The (EB) World To Know About Autism/ASD
Dialogue on ASD in honor of Autism Awareness & Acceptance M

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#1 baddmammajamma

Posted 02 April 2012 - 11:17 AM

An old thread with some valuable...thanks for helping me keep it active in 2014 so that other EBers can benefit from the discussion. Thanks!

Dear Fellow EBers:

April 2nd is the U.N declared World Autism Awareness Day and the month of April is Autism Acceptance Month, a movement generated by the autistic community. Over the last three years, in recognition of these events, I and some of the other mothers of kids with ASD started an ASD thread on the WDYT board.

We ended up getting a lot of great questions from other parents, and it sparked a very healthy and respectful discussion about a set of conditions that are increasingly common in Australia and around the world.

Very signficantly, because of that thread and other related information shared on EB, many parents here have recognized the signs of ASD in their own children and have been able to get them properly assessed, diagnosed, and on the path to support. This is living proof that EB is far more than flouncing skirts and high schoolish cat fights!

There are SO many things I'd like to say about ASD and so many myths I'd like to dispel. But I am going to confine myself in this initial post to my personal passion: helping other parents recognize the red flags for ASD & understanding what steps to take to get help.

I've done a one-time blog to capture this information and share a bit of our family's personal journey on the autism spectrum (thanks to those of you who have shared it with your friends on Facebook). This piece also contains some fabulous links about autism, including a number of self advocacy links. You can also access it by clicking on the link in my signature.


Out of sheer exhaustion, I am going to steal an excerpt from it to summarize what I would like the EB World to know about ASD: the very basics of ASD and key early warning signs.

Please feel free to join in with questions, comments, your own experiences...whatever keeps the conversation going! (No bacon memes, please). style_emoticons/default/wink.gif

With big thanks,



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.


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.

UC San Diego's Autism Center for Excellence has one of the very best summaries I have ever seen re kids in the 12-24 month range:

Additionally, the world renowned Kennedy Krieger Institute in Baltimore recently put together these excellent video clips, which show typically developing toddlers versus those who are showing red flags for ASD. Well worth a watch!


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):


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.

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.

A fairly recent discussion on EB re Girls & ASD can be found here:


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.

A recent EB thread on giftedness & ASD can be found here:



If you or your MCHN/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 paediatrician and/or child psychiatrist or child psychologist who focuses on ASD/related issues.

As my daughter's developmental paed 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."

For more information about how to go about getting a formal ASD assessment in your state or territory, please check out this recent thread:


The mums on the Special Needs/Disabilities board have a wealth of knowledge on ASD-savvy professionals, navigating the often confusing assessment process, and are able to provide emotional support to fellow parents who are in that scary place of wondering "Is there something wrong?" Please feel free to lean on us for support or information!

Thanks for reading this far & helping keep this very important topic alive. OK, who's next?

Edited by baddmammajamma, 09 February 2014 - 08:29 PM.

#2 mum2jp

Posted 02 April 2012 - 11:22 AM

What a great summary of infomation original.gif

Edited by mum2jp, 02 April 2012 - 11:22 AM.

#3 Jax12

Posted 02 April 2012 - 11:27 AM

Thank you for this post and I will be sure to share your blog on FB to help raise awareness.

#4 boatiebabe

Posted 02 April 2012 - 11:31 AM

I have a question  waves.gif

I was having a conversation with my daughter (8) this morning. We were looking thought the paper and there was a story on autism. It was the blue lighthouse that got her attention!

She asked me what autism was and I tried my best to explain it to her. I think I did okay but I was wondering how best we can explain autism to our children?

#5 PrincessJo

Posted 02 April 2012 - 11:34 AM

What a fantastic resource. Thankyou

#6 FeralSingleMum

Posted 02 April 2012 - 11:35 AM


#7 Guest_~Karla~_*

Posted 02 April 2012 - 11:36 AM

If I had to pick just 1 thing, it would be EYE CONTACT. Kids with ASD can have great eye contact. In fact, I have 1 with ASD who will walk up to random people, get right in their face and stare right in their eyes and say "hello man/lady". I have another with ASD who will hide behind me and will look at the stranger but avoid eye contact. And I have another with ASD who will just totally ignore the fact that there is someone there unless there appears to be something he will gain from interacting with them. Then his eye contact is perfect and appropriate and he will use his manners and can charm the pants off any grown up... But only if he feels there something in it for him.

But, back to my point, kids with ASD can have no eye contact, limited eye contact, inappropriately intense eye contact or perfectly appropriate eye contact. Don't use eye contact as as excuse to not investigate your concerns, because as with every single aspect of autism, the level of eye contact varies greatly between children.

Edited by ~Karla~, 02 April 2012 - 11:38 AM.

#8 bubba boo

Posted 02 April 2012 - 11:39 AM

Boatiebabe -
If you can perhaps show your daughter the YouTube video below, it helps explain it easier from kids perspective

Thank you for making an effort to try educate your daughter it will make life much easier for my ds 1 as he gets older if more people understand

#9 eddjan07

Posted 02 April 2012 - 11:45 AM

Good on you BMJ again for your tireless efforts - you make an amazing difference!

#10 MintyBiscuit

Posted 02 April 2012 - 11:47 AM

what a great blog post BMJ - I'll be sharing it on FB. The way you talk about your daughter's different abilities shows such a positive attitude, I really admire it original.gif

#11 Sares83

Posted 02 April 2012 - 11:47 AM

wow! What a great summary of information! Thanks BMJ original.gif

#12 NotRocketScience

Posted 02 April 2012 - 11:50 AM

That's a great post OP.

My little fellow who is 5.5 has only just been diagnosed and wish i'd seen a list like that a couple of years ago. He is mildly on the spectrum but still would've been good to get an earlier diagnosis.

I have a question that someone here might be able to answer.

How does Aspergers vary from Autism? My paed told us that Aspergers is no longer going to be formally diagnosed and that it will be all under the umbrella of Austism Spectrum Disorder.

#13 Minichi

Posted 02 April 2012 - 11:56 AM

It's hard to add to that wonderful wealth of information bjm!!

I guess the couple things that I really wish people on eb would know about autism today are:

1. 'bad behaviour' is not part of the diagnostic criteria.  Not all children with ASD meltdown or have tantrums.  I have read a couple of people say 'he doesn't have ASD because he is a well behaved boy' or 'he has just normal toddler tantrums they are not what I have read about ASD meltdowns'

This was one of the things that prevented me from getting help for my son sooner.  He was diagnosed at 2 years 10 months and had never ever had a tantrum.  He still hasn't.  He hardly ever cries.  Is happy and well adjusted and easy to reason with.

So just because the child is 'easy' doesn't rule ASD out.

2.  When they say the child is inflexible it doesn't have to be with routines.  With our son we parent with a well established daily routine but anytime we change it there is no issue.  We can travel the world, stay in hotels, eat different meals, go about our day in a different order and he doesn't blink an eyelid.  BUT he will protest if a cd is put on shuffle or you leave a word out of a story original.gif  Little things with a little protest and so easy to dismiss.  So if you have concerns look at the little things as well as the big.

3. The final thing that I feel is the most important thing is if you write something about your child on EB and lots of mumd pop on who say things like 'take your child to a developmental paed' 'there are red flags' 'sounds concerning' etc. It's so easy to be frightened and scared and there is a real urge to put your head in the sand and ignore it. Parents who have children that have ASD don't wish it on anyone else but they do know the benefits of getting in early and giving your child the best possible chance through early intervention, which is why they are piping up.    It could be nothing but if it is ASD it's not going to go away and by ignoring the red flags you are shaving off the weeks or months or years that your child could be getting the he they need. The only loser in this is your little one.

4. And to finish on a positive note, kids with ASD can be beautiful and smart and clever and cool and happy and although for us it was devastating to learn of DS autism it has made us understand him more, parent him better and enjoy every little achievement no matter how big or small.

#14 NotRocketScience

Posted 02 April 2012 - 12:04 PM


My DS5 has only ever had one tantrum ever. It was one of the reasons we never thought he had ASD. He is the "rules police" and not the rule breaker.

#15 ~*MissPriss*~

Posted 02 April 2012 - 12:08 PM


Below is the diagnostic criteria for 'autism'

Autistic Disorder
A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):
(1)  qualitative impairment in social interaction, as manifested by at least two of the following:
(a)  marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
(b)  failure to develop peer relationships appropriate to developmental level
©  a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
(d) lack of social or emotional reciprocity
(2)  qualitative impairments in communication as manifested by at least one of the following:
(a)  delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
(b)  in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
©  stereotyped and repetitive use of language or idiosyncratic language
(d) lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
(3)  restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
(a)  encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(b)  apparently inflexible adherence to specific, nonfunctional routines or rituals
©  stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole body movements)
(d) persistent preoccupation with parts of objects
B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.
C. The disturbance is not better accounted for by Retts Disorder or Childhood Disintegrative Disorder.

The main differences between Aspergers and Autism is generally how many 'box's' are ticked in each category. Aspergers being in the higher functioning category. Often what you will also find is that a child with Aspergers will generally not have a speech delay. They generally have more difficulties in the area of pragmatic language, rather than expressive of receptive or all three.


#16 DontKnowDontCare

Posted 02 April 2012 - 12:14 PM

bump - thanks for that post, BMJ original.gif

#17 lishermide

Posted 02 April 2012 - 12:25 PM

A few things I'd like peopl eto know from our experience with ASD:

Children with Aspergers often have have speech issues. My DS acquired language on schedule, but it was his use of that language that was a problem. He had zero pragmatic language at 5yo. He has unusual prosody (rhythm), an odd accent & his speech is quite formal. Yet his vocabulary is outstanding.

Not all children with ASD are avoidant of social situations. Many of them love being social, but it's how they go about it that is impaired. They don't just get the social rules other kids pick up naturally. In many cases they are overly friendly with strangers, not getting that's it's inappropriate.

Edited by lishermide, 02 April 2012 - 12:26 PM.

#18 Mose

Posted 02 April 2012 - 12:25 PM


#19 L&E

Posted 02 April 2012 - 12:27 PM

I'd like to contribute as the teacher of kids with ASD, if that's ok. I am a special education teacher in an inclusive mainstream school.

I will not force my students into a situation with no winners. I will not set them up to fail. I am not pandering to bad behaviour anymore than providing a wheelchair is pandering to a student with paraplegia. I will not stubbornly refuse to compromise when my student is struggling with the situation. Removal from the environment and allowing calm down time is not taking the easy way out...it's often the only way forward. I will not insist a student complete a written piece of work when they can tell me orally and show the same knowledge and understanding. Using extrinsic rewards does not pander to disobedient students. I will not stand my ground and battle over punitive, pointless situations. I will guide with empathy and understanding, and will advocate for the understanding that children with ASD compromise so often to live in our noisy, rule bound, illogical world, so the least we can do is meet them half way.

#20 3hearts

Posted 02 April 2012 - 12:33 PM

Thanks for posting this.  I will visit the youtube link that you left for another poster.  My prep son has child in his class who is autistic.  Every afternoon I pick him up then head down to my daughter's classroom.  My son's classmate will then walk past us with us with his mother.  My son will cheerfully say "Bye xxxxx" and then I notice his mother will always stop and direct her son on how to reply which he happily does.  My son seems pretty oblivious as to what's going on and waits patiently while the boy's mother explains to him about how to respond.  It's smiles all around and they move on.  The other day I was walking ahead and the boy's mother was talking to someone else so when my son said goodbye to him there was no response.  My son repeated the goodbye 2 times and then his mother came over to help her son with the return goodbye.  It's the first time I realised that I really should open some dialogue with my son about his friend and honestly I wasn't sure where to start.  I'm so afraid of using the wrong terminology. This post has been very helpful.

#21 twistedkites

Posted 02 April 2012 - 12:33 PM

What a great post BMJ
I'm still catching my breath after my own DS diagnosis at 18 months not so long ago. I wanted to bump this thread, even though I'm probably still a bit too emeshed in the early stages of fighting for my own little guy to have too much headspace left for the bigger cause.

I posted on EB's SN board with worries when my  son was 10.5 months. I was given a sympathetic ear and encouraged to check things out further, which is much more than i can say for an early childhood nurse I saw monthly or a paed that told me red flags usually go away!  I probably would have rather been told it's way too young to worry, but I followed this advice and my own gut instict and made an appointment with a developmental paediatrian.

With a diagnosis at 18 months we've been able to get my son into a great early intervention program by 19 months. 1 month in and we are already seeing a huge upswing in eye contact and probably other less tangible changes too (more social referencing, word use...). We are only at the start of our journey but am so glad we have the opportunity to get in and help our son while he is under 2.

So, what I want the world/ EB to know about autism is that you DON'T necessarily have to wait til 3 to think about getting a diagnosis. THere are certainly kids at the milder end of the spectrum who cant be definitively diagnosed til 3 or later but for many others there are very clear signs to look out for that can be seen by 12 months (see the info in the opening post) . The earlier intervention begins, the better the outcomes so if you have doubts or worries about your little one check them out! And if the first (and even second) health professional you see is overly reassuring but you still feel like something's not quite right, make an appointment with a developmental paediatrician.

Edited by twistedkites, 02 April 2012 - 04:58 PM.

#22 Tippi-toes

Posted 02 April 2012 - 12:49 PM

Fantastic post BJM, thanks for putting it up! My first child is due in August and its comforting to know that while we hope for the best for our children ASD is not as terrible as we are often lead to believe.  

Both these quotes I thought we're beautifuly put:

QUOTE (kh79 @ 02/04/2012, 12:56 PM) <{POST_SNAPBACK}>
And to finish on a positive note, kids with ASD can be beautiful and smart and clever and cool and happy and although for us it was devastating to learn of DS autism it has made us understand him more, parent him better and enjoy every little achievement no matter how big or small.

QUOTE (L&E @ 02/04/2012, 01:27 PM) <{POST_SNAPBACK}>
I will guide with empathy and understanding, and will advocate for the understanding that children with ASD compromise so often to live in our noisy, rule bound, illogical world, so the least we can do is meet them half way.

Thank you

#23 boatiebabe

Posted 02 April 2012 - 12:52 PM

Thanks for that link to You Tube!

#24 frizzle

Posted 02 April 2012 - 01:34 PM

Just another bump from me.

I don't have much to add, as the Mum of a boy with ASD I cab relate to every post, but just want to reiterate this point
So, what I want the world/ EB to know about autism is that you DON'T necessarily have to wait til 3 to think about getting a diagnosis

DS was 2 years and 1 month when diagnosed. Everyone thought I was overly worried and I wasn't. The problem was real and denial wasn't going to make it go away. I will never regret getting help early as it has really opened up his world.

Edited by frizzle, 02 April 2012 - 01:39 PM.

#25 Mrs Dinosaurus

Posted 02 April 2012 - 01:45 PM

Great work as usual BMJ.

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