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Autism/ASD: What I'd Like The (EB) World To Know

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#1 baddmammajamma

Posted 02 April 2010 - 05:26 AM

ETA: Though this thread is from April, I am giving it new life because the messages are timeless. Many of you who have taken time to read some or all of this thread, and on behalf of those of us with kids on the spectrum, thanks for you willingness to learn more about ASD!

Hi all:

Today, April 2nd is the U.N.-declared "World Autism Awareness Day." My family is one of the millions around the world that is impacted on a daily basis by autism, as my beautiful daughter has an autism spectrum disorder (ASD).

I've been struggling with what I want to share on EB, as there are so many things that can be said about ASD, which, according to recent studies, affects ~ 1 in 120 Australian children.

But rather than hog the dance floor, I am simply going to share the ONE thing that I would most like the EB world to know about ASD. It is my hope that others of you who have been touched by ASD will chime in with your thoughts as well. I've posted on WDYT in the hopes of reaching more people.

So here goes. What I want people to know is this: It is important to be aware of the signs for ASD. Early detection means better prospects for meaningful early intervention. [ETA: as my friend sarita is happy to remind me, the brain is an amazing thing. Even if ASD is not detected until later on in childhood or beyond, there are still very signficant ways in which people can be helped]

Autism spectrum disorder (ASD) is an umbrella term that refers to a range of conditions that share some common symptoms:  (i) difficulties in social interaction, (ii) difficulties with communication, (iii) restricted/repetitive interests and behaviors. Very often, there are sensory sensitivities as well.

Chances are, there are some EBers on line right now whose children have an undiagnosed autism spectrum disorder. Many people (myself included at one time) are not aware of the warning signs for ASD or mistakenly think that because their child makes eye contact or smiles that ASD can be ruled out. In fact, it's called a "spectrum" because the range and severity of impairments can vary dramatically from person to person. ASD can be particularly hard to detect in the more mildly affected kids or in kids whose ASD is "masked" by more debilitating handicaps.
When I gave birth to my beautiful baby girl in 2005, the last thing I thought I would be dealing with as a parent was ASD. In my naivety, my husband & I thought autism was something that only parents of boys needed to worry about.  We had a little girl who was (and still is) happy, smart, emotive, charming around strangers, and a great cuddler. How could she possibly be on the autism spectrum?!

Looking back, there were actually plenty of early warning signs when she was a baby and toddler -- severe sensory issues, difficulty integrating with peers (but not adults, which is not uncommon, I've learned), difficulty following group activities at Gymbaroo, a massive vocabulary of nouns but no two word phrases, an obsession with letters and numbers, for instance -- but my husband & I didn't know that these were potential flags for ASD. And, if I am being perfectly honest, we preferred to remain blissfully unaware -- it was far easier to listen to friends and family who reassurred us that she was just "spirited," "quirky," "a brilliant introvert" and that "all kids develop at their own speed" rather than probing our concerns with specialists.

ASD -- even in "mild forms," like what my DD has -- is a serious, lifelong developmental disability. The sooner children are diagnosed (or the sooner the child is identified as being at risk for ASD), the sooner that the appropriate early intervention can take place. And believe me, early intervention can make a huge difference in the lives of these children.

According to the world renowned National Institute of Mental Health (NIMH), some possible early indicators of ASDs include the following (list not exhaustive):

* Does not babble, point, or make meaningful gestures by one year of age
* Does not speak one word by sixteen months
* Does not combine two words by two years of age
* Does not respond to his or her name
* Loses language or social skills
* Avoids eye contact
* Doesn't seem to know how to play with toys
* Excessively lines up toys or other objects
* Is attached to one particular toy or object
* Doesn't smile
* At times seems to be hearing impaired

Parents may also notice that their child doesn't meet the physical, mental, language, and social developmental standards that most typical children reach. Of course, showing one of several of the flags above does not mean that a child definitely has ASD, but it could be reason for a parent to consult a qualified professional.

To learn more about early red flags, check out:

The learn more about red flags with preschool and school aged children, check out:

If you have any concerns that your child might have an ASD, I urge you to jot down/track the traits and behaviors that concern you. At the same time, ask your GP or MCHN for a referral to a qualified professional (e.g. developmental paed or clinical psychologist) who can probe these concerns further. It might turn out that your child is simply a late bloomer or a highly spirited/quirky/introverted kid, but it might very well be that he/she has real developmental issues -- ASD or otherwise -- that need to be addressed.

As my daughter's straight-talking developmental paed is fond of saying, "No child has ever been harmed by an assessment or early intervention, but plenty of children have suffered from not having received timely support."

Thanks for reading this far & giving me a chance to share something that is so near and dear to my heart. If this can help just one family whose child would have otherwise gone undiagnosed, then it will have been a message worth posting!

OK, who's next? original.gif

Edited by baddmammajamma, 19 October 2010 - 05:00 PM.

#2 shushh

Posted 02 April 2010 - 06:20 AM

Thank you for starting this thread!

Even though we are not personally afftected by ASD we have friends who have children who have ASD. As with so many things these days, awareness is vital. Not just for those with ASD but also for those around them. Its also necessary to break down the stigma. It breaks my heart to see friends be "ashamed" that their child has ASD, or to see others embarrassed. It also frustrates me when others are quick to judge and  make comments which are insensitive and inaccurate.

So as baddmammajamma has requested, lets share your stories and educate ourselves!

#3 baddmammajamma

Posted 02 April 2010 - 06:54 AM

Thanks so much.

I forgot to add something very important.

It can be really overwhelming to contemplate that your child has a serious developmental disorder like ASD. When I first had my concerns about DD,  I was overrun with fear, despair, anger, jealousy (of people who had "normal" kids), and guilt for feeling jealous. I didn't feel like any of my friends could relate to what I was going through. To make matters worse, my otherwise sweet DH was in complete denial about DD's potential issues and thought I was simply being a neurotic first-time mother.

One of the things that has helped me most in my personal journey has been leaning on the strength of other parents (mainly mums!) who have children with ASD. It's a club that no mother wants to join, but let me tell you, I've met some of the most wonderful, inspiring, helpful people as a result of DD's diagnosis.

I'm not trying to put in a shameless plug for the ASD support boards on EB, but please, if you feel alone & scared, or if you need more information about how to go about getting your child assessed, or effective therapies, or you just want a sympathetic shoulder, please reach out. There is no reason to make the journey alone. There are so many parents who are walking in similar shoes.

#4 mamma2miracles

Posted 02 April 2010 - 06:59 AM

My gorgeous firstborn has some autistic traits and developmental delays.  They don't know whether DS1 is on the spectrum or not, he may be, he may not, as there are other traits that do not normally go hand in hand with ASD.

BUT we are acting and trying to get him help NOW.  The point is if he isn't ASD, we haven't harmed him by starting early intervention BUT if he is, then we haven't wasted time.

And I guess that's what I'd say, if there are any problems with your kids and you don't think it could be ASD but something is just not quite right, act on it.  It's better for you to have wasted a little time as an adult than to have let your child fall further and further behind because nothing was done.

Yes my son is super affectionate and cuddly, very obviously loves us, loves his little brother, makes eye-contact, is incredibly gentle, doesn't line things up but the worrying signs are still there, and regardless of all the "traits" that say it's not ASD, I prefer to move now, I wish I'd done more when we first realised he had developmental delays instead of letting the paediatrician say "let's wait 6 months", then "let's wait another 6 months".  AS BMJ says, it's a spectrum and to say all ASD kids are the same is the same as saying all blond kids are the same.

If there are any problems at all - seek early intervention now, after all it's not going to harm your child but the lack of it could!

#5 Daisy Chain

Posted 02 April 2010 - 07:04 AM

Thank you for sharing your story.

We are just in the pre-conception stages of having our Ds assessed. So early that I am not even sure of what all the different spectrums there are. Basically just signed the papers at 3yo Kinder, so he can have an observer come in and observe him.

With what I have read I can take little bits and pieces and yes Ds fits that, but no, he doesn't have those signs.

I'm sure, I will gain more knowledge when I understand what I am reading. wink.gif

#6 Miss_Understood

Posted 02 April 2010 - 07:07 AM

Thank you for posting this..

People have always classed my daughter (Now 6) as rude.

From a young age, I knew she was different. Having a brother with Asperger's, I knew some of the signs to watch out for. When she was only a baby, she hated being touched. The Child health nurses would always tell me to wrap her tight but that would just upset her more. Breastfeeding her would make her scream as if she was in pain. Out of pure frustration, I weened and put her onto a bottle.. One night, I'd had enough of the screaming and I laid her down on the bed, me beside her, and fed her without holding onto her. She guzzled down her bottle with not a noise. From then on, that was the way I fed her. She became independant very early. She'd feed herself which became a blessing as we didn't have the screaming anymore.

She started moving around early. By 4 months she was crawling, 6 months standing and climbing the screen door, 8 months, running. By 1 she had a massive vocabulary. My son who was a year and a bit older, was deaf and had cerebral palsy so I had nothing to compare her to. (I know.. it's not nice to compare) He had a global delay (Which he has now caught up on)

I got in touch with disability service for both of the kids. I was pregnant now with my 3rd and things seemed to be getting worse. The head banging started early. 6 months. It was horrible watching and knowing that if I stepped in to try to make her safe, it would only last longer. She'd go 2-3 sometimes more hours, banging her head and knocking herself unconcious. She'd scratch her skin off.. I found out then, that she had allergies to certain things and her skin would itch, she'd have headaches, and just generally, felt like crap. I fixed that problem, and another would start.

To be honest, I started hating her behaviours. I couldn't stand being around her and wanted someone to take her.. even for a day just so I could live in normality for a bit. I got lot's of in home help. I had a few organisations helping us.. but we never did get anywhere with her.

She could count to 100 by the age of 1.. write and spell her name by then too.. She was doing multiplication by 2.. and worked out that $2 would get her 4 ice creams at McDonalds (LOL!) I started reading to her and I got her some year 1 work books to work with. By 4, she'd gone through the year 1, 2 and 3 english books.. and was up to the year 4 maths books.

More signs came out when she was about 3... she walked up to a stranger and says. 'How did you get so big? Do you not eat healthy and exercise?' to which this woman, broke down in tears and left. I tried to apologise but she'd already gone. I felt terrible.. DD had no idea why this woman was upset. Afterall, she was just stating what was right in front of her.

I worked with professionals doing social skills to try to get her to greet people and to keep things that she thought, to herself. She'd now been seeing a psychologist for a few years now and that helped with a few of the problems.

Fast forward to now, she's in grade 1, LOVING school.. Wishing they'd give her a lot more work. But she still doesn't have a diagnosis as it's taking forever to get in to see a paediatrician. Being out bush isn't helping. Every other assessment has been done.. she has anxiety issues and trouble relating to other children. She loves adults and will talk to them about what SHE wants to talk about for hours.. but it makes no sense to us as she babbles on about things we have no interest in..
The 'diagnosis' so far.. is 'gifted' and 'High functioning Asperger's'.  

Some days I wish she would wake up 'Normal' but then she wouldn't be my unique little girl. Other days.. the screaming gets to me  so bad I just want to take her somewhere else and leave her there.. but I know that I couldn't bare to be away from her.

#7 Dani

Posted 02 April 2010 - 07:15 AM

Amen sista!

As the mother of a 2004 ASD baby I second everything BMJ has said.  The "window of opportunity" truly is critical as she says.  When the child is aged between 0-6 they are like little sponges......that's the best time to help them.

There is talk out and about that autism is 'the new black'.  That's bull$hit.   These kids with autism have really got a rough ride ahead of them, as have the parents that have to drive all of the intervention in order to get them the best start in life.

IF your own child/ren has a child on the spectrum in their class/in their peers then PLEASE endeavour to educate them, please.  Ensure they are invited to birthday parties and included wherever possible.  Not only will the mother be eternally grateful for the opportunity of their child having one more 'social experience' but it's so heartwarming to see a child included for a change, instead of excluded.

May I add to the OP's post that if anybody has any questions pertaining to ASD to just shoot with any questions and not be nervous about asking. We would rather it get talked about if it helps just one person understand it that little bit more......absolutely!

#8 sweetmango

Posted 02 April 2010 - 07:25 AM

Thankyou so much for sharing. What is hard in my situation is that I am a foster parent, so my boys never came to me until they were 7 and 5.  I feel that they have mild autism and the older ones does have that diagnosis and it is a lot harder to work with than starting when they are much younger.  We now have their baby sibling and will be keeping an eye on him to see what happens..so far..so good..

Thanks for putting up that information OP.

#9 Kay1

Posted 02 April 2010 - 08:08 AM

Thank you for sharing your stories about your wonderful kids. From what I have read and learned from EB and from knowing people dealing with ASD I know that I for one stop and think when I see a child "misbehaving" while out and instead look at what that child might be dealing with in that moment if indeed they have an ASD (or any other disorder), rather than simply seeing them as being out of control. It has also given me a huge amount of respect for parents who are dealing with it every day and seeking treatment and intervention for their kids.

I am teaching my kids to relate to each person as an individual and with respect for that person's idiosyncracies, likes and dislikes and encourage them not to expect everyone to be the same. I hope that this will help them be accepting of kids with ASD or other challenges and not to see being different as a negative. One of my son's best friends has an ASD and I love watching them interact. He sees her as just one of his friends yet he appreciates her unusual take on things and allows her space when she needs it. They might have a raucous game with much interaction, laughter and screaming or they might hardly speak and sit with their backs to each other reading books. original.gif

#10 Sweet like a lemon

Posted 02 April 2010 - 08:12 AM

BMJ, thanks for a well written post. I will be perfectly honest and say  that I am reading this because I have absolutely no knowledge of  Autism at all. Certainly with 1 in every 120 children diagnosed with it  you would think there would be a far greater awareness.

I will issue a challenge to EB members - since today is Autism Awareness day, I think we should all have a read a leave a comment so that this topic stays on the front page for at least today.

Thanks to the wonderful mums who have shared their experiences so far.

#11 GennaGal

Posted 02 April 2010 - 08:28 AM

There are so many mums who have been in the trenches so much longer than our family. I can only speak from our experiences of having a nearly five-year-old son who was diagnosed with Asperger's Disorder last year. We are perched on the milder end of the spectrum and are very much aware that DS, while a handful and a half, does not have to contend with some of the more hard-core issues often associated with ASD.

He is smart and funny and interesting. But he struggles to know how to play with other kids; can be very rigid in his thinking; has some unusual obsessions (numbers, calendars and the weather!) and has difficulty following the natural flow of a conversation.

He can read, write and do quite complex maths problems, but he has never been invited to a birthday party

He makes my heart swell with pride and then splinter into a million little pieces several times each day.

One thing I want people to know about ASD is that it probably doesn't look how you think it does. I wince whenever I see it written that someone's child couldn't have an ASD because they are "loving" or "cuddly" or "they have empathy".  Our son is just about the most affectionate and loving kid you could imagine and he becomes genuinely upset if someone he loves is sad or anxious. He loves his little sister and he so desperately WANTS to play with other kids - he just struggles to connect with them in any meaningful way.

And he doesn't have meltdowns. Not all ASD kids do. I think it's great that there is more awareness about meltdowns and the fact that the extreme behavioural issues some families are dealing with are not the result of poor parenting.  At the same time though, I would hate to think that the minute people hear the word 'Asperger's' they automatically presume that they are going to be dealing with a child with extreme behaviour. And that's something I really worry about with DS about to start school next year. He has enough to contend with, without having to drag around other people’s preconceptions of him. Just like neurotypical kids, all ASD kids are different, have their own personalities, strengths and weaknesses.

ASD often comes with associated conditions. Our gift with purchase is a suspected case of auditorary processing disorder. This means that DS has difficulty filtering sounds, particularly in noisy environments.

We feel lucky that we have got a diagnosis before he started school and we are very appreciative for the increased awareness about ASD and the Helping Kids with Autism funding. We are very mindful that so many families with children with special needs don’t receive the same level of support.

Most of the time I feel happy and hopeful about our son's future. Our kids have the potential to learn so much and to achieve so much. I want to say to anyone who has fears that their child might be on the spectrum to get it checked out.  The right intevention can open up the world for your child.

#12 twinboys

Posted 02 April 2010 - 08:33 AM

I would like everyone to know that ASD kids are amazing (and so are their NT siblings)
I have one litte fellow who is either high functioning or an aspie (I don't really mind what he is classed as)
He is lucky to have his twin brother as a great social role model and I am lucky that we have a circle of friends for the boys and they all play well together. Sam does slip away at times when it gets too much.

San was picked up at 2 and a half by his childcare and was suggested to have his hearing checked as he did not respond to his name or follow instructions. He did need grommets but a lot of his quirky behaviours were becomming more noticable and he had not grown out of baby sensory play activities like splashing water and sprinkling sand/gravel/leaves. He was dx'd at 3 years and 3 months.

Yes my world ended for a month and my family thought I was a bit odd for a while there  biggrin.gif
We are back on track and i often forget that I have a SN kid.
He is going to 2 days a week at E.I. and 2 days a week to mainstream kinder ( and loving every second of it)
My next big task is to find a school that will suit both of them. I am terrified that Sam will be labelled as a naughty or disruptive child at school. I am hoping we can find a school who will be able to guide Sam through the confusion and chaos of a classroom and playground and allow him to be happy and learn.

#13 baby*girl

Posted 02 April 2010 - 08:36 AM

I think it is really important for the general public to know how varied the spectrum is.  Some children are profoundly disabled and autism and effect the physical capabilities of a child, for those with severe low muscle tone (DD being in a mobility aid most days), no language, poor comprehension.  And other children are very much like NT children, but have delays and difficulties in social situations.

I have children at both ends of the spectrum and it is very difficult for people to undertstand they have the same condition, but are so differently affected.

We are almost 11years, living with and now very much accepting Autism into our family

Great PP's everyone. Thank you so much for posting.

#14 kadoodle

Posted 02 April 2010 - 08:40 AM

I was diagnosed with ASD as a teenager.  I was in a psychiatric facility at the time suffering from PTSD and depression due to being bullied severely at school.  I was thought of as being strange, weird, awkward, etc... and in the way of kids everywhere, I was bullied as I was different.  I also didn't want friends - or any sort of social interaction for that matter.  I just wanted to be left alone with my thoughts.

As a kid, I loathed physical contact or noise. I would have very happily lived in a vacuum, with just the clatter of my thoughts for company.  Small talk and social conventions left me totally bamboozled.  I was also very disdainful of the stupidity and needyness of "normal" kids.

I have a couple of girlfriends from high school who persisted with me, despite my being so cold and stand-offish.  Over the years they taught me how to be a friend.  I met DH at uni, he taught me how to be in a relationship.  My need to be alone and tendancy to become overwhelmed with too much noise, movement or touch can occasionally give him the irrits though.

I've "mellowed" a lot since having children.  I guess it's because I've had to put their needs for closeness and love ahead of mine for distance. I've become better at pretending to be neurotypical, as I want them to have a normal childhood.  I still struggle with eye contact and small talk though, it's totally exhausting when I'm at playgroup and people want to chat.  What the heck to do I talk about?  Does anyone find being stuck in a room with strangers fun?  The noise!  But I suck it up and persist because it's good for my kids.  

My father also has ASD, but is much more severe.  He's never wanted to try and fit in though.  He's embraced his quirks and differences, whereas I've tried to squelch mine.  He's also a lot more intelligent (IQ 185 compared to me at a measly 166) and sees no need to pretend to be normal, when he can be a novelty.

None of my kids seem to have ASD, although DD1 has "traits" according to her assessments as a toddler and school psych assessments last year.

#15 baby*girl

Posted 02 April 2010 - 08:42 AM


As per your early question.  The prognosis of a LF Autistic adult is much that of someone with any other profound disability. The services dont exist.  LF adults either live in small homes with other people of similar needs with funded support, if they are lucky or remain at home with their parents full care.

The "medical advice" is that if a child doesn't talk by age 6, they most likely will not.  My DD is classed "permanent non-verbal" as she is 11.  Children with LF autism often have other medical conditions such as Intellectual impairment or another disability. Autism is very common within children with further disabilities and medical conditions too.

Thanks for asking.

#16 Kylie™

Posted 02 April 2010 - 08:47 AM

What i wanted to say has been covered already, so i will just share one personal 'problem' that i often encounter with friends of mine.

Yes, my son is sweet and mostly innocent.  But he also has his bad moments too, where either of us know exactly how to control the meltdown.  When hw is like this i dont take him out or have people over because it only fuels the fire.  This is not because of me and not wanting to 'deal' with it- its about trying to keep my child comfortable.  I am constalty acting in the best interests of my little man.

Telling me that you wish your kid/s behaved as well as my ASD child does not sit right with me either.  I try not to get offended by it but cant help it.  Think about what you say before you say it.

I have learnt alot about ASD kids this past year.  My son started school at a special school.  His class consisted of 7 ASD boys, 3 of whom are very violent.  It was a big struggle looking into other avenues to only find i had nomore options.  I started to think perhaps my child was the only placid ASD child around, but this year things are much better in a new class and he loves to go to school.  I guess what i am trying to say is that you really do influence your children so much in those first 6 years, in the way you speak, act and treat other people.

If you think anything is wrong, it is impotrant to do what you can to get started with early intervention as soon as possible, these things can make or break and ASD child.

Edited by Kylie™, 02 April 2010 - 08:48 AM.

#17 Monstercroc

Posted 02 April 2010 - 08:55 AM

This is our first year as a family affected by Autism. I'm glad World Autism Awareness Day has happened so soon after Jonah's diagnosis, it's so good to know others are being made aware of ASD.

I'll share something I'd like people to know or understand and then tell a little bit about our journey so those who don't want to read a ramble :blush" can skip the end lol.

"I wish people understood that Autism is a spectrum and just because my baby looks at you or maybe even smiles at you, it doesn't mean he doesn't have autism. We have a diagnosis, a definitive diagnosis done by a qualified developmental paediatrician. Please don't ask me if I'm 'sure' he has autism even if today he 'doesn't really look like it.'

Spend 24 hours with him my friend and then you will SEE autism. Watch how he wanders straight past his brothers not even attempting to join in their game. Watch him shake his head repeatedly from side to side, smiling at nothing as he does it. See if you can spot him playing appropriately with any toys, I'll bet you can't. In this space of 24 hours count how many times he brings me a toy or a book to read, anything he is interested in. You won't have to count very high, not at all really because he's never done this.

How many times today did he let me know he was hungry or thirsty? None. He doesn't know how to tell me. No it's not just because he can't talk, he can't TELL me anything because he doesn't know what communication is, he doesn't know there is such a thing as communication. This is what we are trying to teach him.

But he can show me that he loves me. He climbs all over me, smiles at me and howls with a broken heart if I leave him. He loves playing 'peek-a-boo, something I am so happy to say we taught him to do. He's a happy little boy who enjoys life even though he can't tell me so.

So please, if a parent tells you their child has autism, or any other disability, please don't dismiss them or try and tell them you don't really think their child has it or perhaps their Dr was wrong. They know, they know their child and they know the diagnosis and they know their child does indeed have it."

OK, ramble over! LOL. Now the journey!

12 years ago I was working as a therapist for children with Autism. The therapy was called ABA and we were one of the first teams to bring it into Australia. I saw so many children make some great gains with ABA and also met my now 'bestie' when I was asigned as her son's therapist.

Somehow I thought that this would immunise my children against autism, I mean, what are the chances that I would work as an ABA therapist with so many children with autism and then have a child myself who has classic autism? NONE! It would never happen to me. I mean, that's just absurd!

Jonah came into the world after a very rough pregnancy. We'd declined an amnio but he was at a very high chance of having Down Syndrome so we were well prepared for that. He was born 5 weeks early after suffering from IUGR, he was born not with Down Syndrome. Next they were worried he had Cystif Fibrosis (CF), tests when he was 2 months old cleared him from this as well. At 10 months he was diagnosed with severe iron deficiency for which he is still undergoing treatment.

When Jonah was 16 months old we were out with friends who have a child the same age as Jonah. Their little girl was pointing to her belly button and I realised that it has been a while since I saw Jonah do this, point to anything. I waited until we got home and tested him, "Where are your eyes?" nothing, "Jonah, where is your nose?" again, nothing. But he KNEW these, I know he did, he was doing them only weeks earlier!

Then I checked for all of the other things he had learned, they were all gone. I realised he hadn't spoken to me in weeks, he always yelled "Car!" and "Go!" whenever we were going out, he loved the car so much. But those words were gone, there was no speech.

The only thing I knew that caused regression was autism. I cannot describe the fear that shot through my body when this bloody big penny dropped. I rang my bestie, told her to tell me all the things about Jonah that were NOT autism. She very gently told me to get him assessed. I asked her again, "Surely you don't think it's autism do you? I mean, is he anything like Jayden (her ASD son)?" Again, she said I should get him checked.

So we did, we went to the child health nurse, then to the paediatrician and were then sent straight to a developmental paediatrician. A stroke of luck saw a cancellation and we saw the Dev paed the day after the paediatrician. She asked us many questions, she observed Jonah for an hour and 20 minutes, I told her what I was worried about and I told her, "Look, I know that some of the things here are things ASD kids do but I just don't think that's what we're dealing with. I know autism, I know what it looks like but I just can't see that this is what is wrong with Jonah."

I'll never forget her reply, professional but as blunt as a hammer, "I'm sorry to tell you but I think autism is exactly what you're dealing with here and if I was to make the diagnosis today that's exactly what he'd get." So there we had it, no going back. If the medical tests (for epilepsy and a few other things) were ruled out, our baby had autism. Needless to say, they did rule out anything else and just over two weeks ago we were given the definitive diagnosis of classic autism.

So here we are! It's WAAD and we have all of our friends and family wearing blue in honor of Jonah and all of the other people living with ASD. We have a very long way to go but we are fighting for Jonah tooth and nail, day and night. He's a delightful little boy and we're beyond blessed to have him.

Thanks for getting this far!

#18 Bel Rowley

Posted 02 April 2010 - 09:20 AM

I don't have anything to add but wanted to give this thread a bump and thank everyone for sharing their stories, I appreciate the opportunity to learn more original.gif.

#19 Guest_Spektor_*

Posted 02 April 2010 - 09:22 AM

I just wanted to ask though, for children with severe autism/ASD (not 'high functioning obviously) what is the prognosis for their future? What type of facilities are out there to cater for them once they reach adulthood? Or shouldn't I ask?

Once they reach adulthood hopefully they will be able to become apart of an organisation like this: http://www.maiwel.com.au/

They could continue to live at home with their parents, or go and live in group homes where they are supervised 24/7.

And yes you should ask, it makes me feel better to know that people are thinking about children like mine (autism and a moderate to severe intellectual delay).  original.gif

#20 baddmammajamma

Posted 02 April 2010 - 09:30 AM

QUOTE (Dani @ 02/04/2010, 08:15 AM) <{POST_SNAPBACK}>
May I add to the OP's post that if anybody has any questions pertaining to ASD to just shoot with any questions and not be nervous about asking. We would rather it get talked about if it helps just one person understand it that little bit more......absolutely!

Great point, Dani, and thanks Pilly, for asking your question.

Personally, I'd rather answer a zillion genuine questions about my DD or about ASD than deal with one hurtful moment caused by ignorance. So thank you to those of you who might not be familiar with ASD but want to learn more!

#21 Guest_Spektor_*

Posted 02 April 2010 - 09:30 AM

Obviously I 'assume' that people intergrated in mainstream society with autism/ASD are high functioning, am I right? I was more interested about knowing about what happens with the other end of the spectrum.

The children that are non-verbal, will they stay that way forever as adults?

Generally yes your assumption is correct.

The children that are non-verbal can remain that way forever, the majority of students at my child's school (K to yr12) are non-verbal (not all of them have Autism though but quite a high percentage do). Many can remain un-toilet trained, unable to dress themselves etc etc etc.

Yet they have their own set of successful progressions/milestones.

My child learning how to jump was a huge achievement in this house.

#22 Monstercroc

Posted 02 April 2010 - 10:51 AM

I just wanted to add too, a common misconception with Autism is that it cannot be daignosed before age three. This is just not true. Sure some children will not be diagnosed before this and three seems to be a common age for diagnosis but many children, including mine, are diagnosed much younger than age three.

#23 Sweet like a lemon

Posted 02 April 2010 - 11:14 AM

Okay, I'm busy read about Autism in Wiki and thinking about family dynamics. One of the sentences that jumped out at me is
Parents of children with ASD have higher levels of stress.http://en.wikipedia.org/wiki/Autism#cite_note-41  Siblings of children with ASD report greater admiration of and less  conflict with the affected sibling than siblings of unaffected children  or those with Down syndrome; siblings of individuals with  ASD have greater risk of negative well-being and poorer sibling  relationships as adults.http://en.wikipedia.org/wiki/Autism#cite_note-42

This is probably a difficult question answer (and to phrase) so forgive me, but how do 'normal' siblings cope? Not only with the additional stress, but from what I can determine ASD children tend towards a gift, literacy skills, music, etc. So how do siblings cope with not being 'gifted'?

#24 JKTMum

Posted 02 April 2010 - 11:25 AM

With all the importance placed on early intervention and it's benefits, there also needs to be more awareness among the general medical community (especially GP's and MCHN) about ASD and really listening to parents if they have concerns about their child's development.

My DD1 has just turned 10 and was recently diagnosed with PDD-NOS (on the spectrum). Myself and my DH have been raising concerns about her development since she was under a year old, but have always been brushed off (she'll grow out of it, you're just not tough enough on her, you expect too much etc, etc). We've had her to Paeds, psychologists and other medical professionals, the last psychologist told me I was making too much of DD1's issues and then started telling me about other patients he had and how much worse their issues were.  rolleyes.gif He wouldn't do any assessments on her, just observed her during our short sessions.

The teachers would say that there were issues, but if I asked for extra help for her or what we should do I was told that she was just being lazy or difficult (she had no trouble doing her work if the teacher was working with her one on one, but when left to her own devices would do pretty much nothing).

Finally my nextdoor neighbour who is also a speechie, saw DD1 having a full meltdown and recommended another psychologist to me who was willing to do a full assessment. We informed the school we were having her assessed and they told me I was wasting my time and money, it wouldn't show anything. Fortunately we went ahead the psych was fantastic. She really listened to us, asked the right questions and validated our concerns. She was so thorough with her assessments and finally gave us a report which said that in her opinion on the assessments she carried out, DD1 was not only PDD-NOS but also ADHD.

I'm kicking myself that I didn't push harder to have the assessments done when she was smaller, but when you have so called professionals telling you time after time that there is nothing wrong, you really start to doubt yourself.

Yes DD1's issues are quite mild compared to many other kids on the spectrum, but her issues do affect her life everyday and her ability to interact with others. Although she is getting some help now (and the school has really come onboard now she has been diagnosed, she has even been granted some funding for extra assistance) it will take a lot more effort for her to retrain and relearn, something that may have been easier for her as a preschooler and may have avoided some of the other issues she has developed by trying to cope without the extra help.

DD1's problems are almost all to do with social interaction, she has always been cuddly, sometimes too much, she has trouble with recognising personal space and can get in kids faces a bit. She was my earliest talker, wasn't attached to particular toys, could play appropriately with toys, didn't line things up, pointed and gestured appropriately, but her eye contact wasn't strong and sometimes she would seem as if she couldn't hear (she did have glue ear for some time, so we put it down to that).

The issues can be very subtle and hard to pickup, but is there are any doubts from parents, teachers or anyone else they should be taken seriously and the appropriate assessments should be done. Even an early detection assessment for all kids at a young age to see if there are indications for further assessment would help to identify some of these kids earlier and get them the help they need. It may cost a bit, but then the amount that would be saved on problems further down the track would probably well and truly cover it.

#25 Bellamy

Posted 02 April 2010 - 11:28 AM

QUOTE (Pillywiggins @ 02/04/2010, 08:24 AM) <{POST_SNAPBACK}>
I have a question and have never asked anyone on EB this (well those of you with children with autism/ASD) because I didn't want to be insensitive. I appreciate most parents live 'in the moment'.

I just wanted to ask though, for children with severe autism/ASD (not 'high functioning obviously) what is the prognosis for their future? What type of facilities are out there to cater for them once they reach adulthood? Or shouldn't I ask?

I don't know any adults with autism or ASD, ofcourse there's a great chance I've met people in this category and never known, I know noone stamps their dx's on their forehead obviously. But hopefully you understand what I'm trying to ask?

Obviously I 'assume' that people intergrated in mainstream society with autism/ASD are high functioning, am I right? I was more interested about knowing about what happens with the other end of the spectrum.

The children that are non-verbal, will they stay that way forever as adults? sad.gif

Of all the doco's I've watched about autism/ASD, they don't seem to include adult-hood.

ETA context: I don't have first hand experience with autism as such, but as DP and I have been together nearly 16 years, I have been privileged to see my BIL and their family continue to confront all the challenges, misconceptions and prejudice that has come their way.

My brother-in-law, who is the same age as me (36), was diagnosed with fairly profound autism when he was very young. My MIL was told to 'give up' and put him in an institution.

Of course she refused to do that, and went down the long and lonely road to helping him through life. While I haven't heard all of it, from what I can tell it was pretty horrible: little-to-no support or understanding was the main problem. My DP ended up being a carer for him too, as my MIL in law struggled to cope.
They went through the toilet training issues, him running away constantly, learning to communicate and helping him to live within the family.

When I first met him 16 years ago, my BIL still had trouble communicating and found social situations very difficult. I must admit that I had trouble adjusting at first, partly because I had not had much experience with people on the spectrum, partly because I was quite young, but mostly because I grew up I a fairly sheltered, middle class home. My BIL would just talk and talk at me about things he was passionate about, but had not learned how to 'converse'.

Skip to today, and my BIL continues to amaze me. He has obtained an arts degree, has had several exhibitions, lives alone (and is in the midst of creating a garden), and has just gotten his driver's license. He is much more relaxed in all situations, and loves to joke around with my DS. Recently, he cooked us a lovely dinner and was a perfect host: from the pre-dinner drinks and snacks, to the table setting and dessert.
We have great conversations now. He knows so much about many different things, and while he tends to ramble a bit occasionally, he is more aware of when it's too much.

It's not all wonderful; he still needs (and thankfully) receives a fair bit of support to help him maintain his routines etc, but he has come a very long way from the child who was 'never going to communicate or function'.

I think things area a little different these days. Still far from perfect in terms of the support and awareness, but at least people on the autism spectrum are not a 'lost cause'.

Edited by Bellamy, 03 April 2010 - 08:20 AM.

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