[baddmammajamma]

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:
http://www.firstsigns.org/

The learn more about red flags with preschool and school aged children, check out:
http://www.autismvictoria.org.au/diagnosis...s_checklist.php

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?

This post has been edited by baddmammajamma: 19/10/2010, 05:00 PM

[shushh]

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!

[baddmammajamma]

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.

[mamma2miracles]

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!

[Daisy Chain]

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.

[Miss_Understood]

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.

[Dani]

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!

[takingitback]

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.

[Kay1]

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.

[ForsakenTruth]

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.