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Thanks Zoe.
Autism is an enigma.
Be willing to put yourself and the person with Autism out in that world, be prepared, pick your battles, quickly and never give up.
Don't ever underestimate their " lateral thinking", their awareness , their perspectives.

From a very young age, my Daughter had the ability to put together initially simple puzzles, now she whizzes through apps, floor puzzles of many pieces and I still can't work her technique in problem solving. It shows she has thought and planning skills despite her label of " intellectual disability".
She has given me a smack on the arm when I'm angrily mumbling ( no swear words) at someone who has cut in front of me whilst driving, she knows my vibes and she's telling me off in her own way.
 
my daughter went to ST Piers school a school for kids with neuro problems and one girl there was autistic and give her 1000 jig saw puzzle of just blue sky and she could do it in less than half hour..she could also look at knitting patten just once and do most complicated knitting on certain things she was classed as genius anything that revolved with math but she could not verabalise anything
 
Wow, seagull she is a genius.

My son's teachers were divided between whether he had autism or not. I gave him some creative teaching at home.
 
Hi Ruth & seagull.
Just remember 2 things about Autism,
1. Don't under estimate their perception to what/ who/ where's ... around them verbal or not verbal
2. They problem solve differently and pay attention to finer details
 
Absolutely Angel! Furthermore, I am a strong believer in getting beyond the cult thinking that is cultivated by buying into a label. As with seizures, there are many many things which can match a diagnosis of autism, or some other DD. Yet, who is doing to painstaking work of sorting out the possible causes of any individual's symptoms, from inborn errors of metabolism, digestive disorders, adverse drug reactions, cardiac disorders or others?

When we buy into a label, we are likely to start seeing "devils" everywhere. There is a comfort and sense of certainty that comes in believing a person has an actual disorder, when the label is simply false or misleading.
I just tried this search on Google:

'medical conditions misdiagnosed as autism"


Autism Often Misdiagnosed In Kids With Genetic Condition ...
www.disabilityscoop.com/2013/09/19/autism-misdiagnosed.../18738/
Sep 19, 2013 - Autism Often Misdiagnosed In Kids With Genetic Condition ... of Autism and Developmental Disorders suggest the two conditions may be .... Some are diagnosed in the pre- & post-natal periods due to serious medical issues ..
http://www.disabilityscoop.com/2013/09/19/autism-misdiagnosed-genetic/18738/

This is just one of many thousands. I believe a lot of scientific thinking, especially regarding diagnosing disorders to be using "tooth fairy logic."

When I child, when a kid lost a baby tooth she put it under her pillow during the night. While sleeping, the tooth fairy would come, take the tooth and replace it with a quarter.

Children,likemany researchscientists, are naturally scientifically inclined. Waking in the morning to find the tooth gone and a quarter in its place were symptoms with only one possible cause; there really is a tooth fairy. I mean no one but tooth fairies sneak up on little kids at night replacing baby teeth with quarters. Obviously, the quarter is indisputable truth that tooth faries exist.
I see the same "scientific logic applied to epilepsy, dual diagnoses, schizophenia, ADHD, and many many medical and developmental disorders.

The belief in a label, especially when reinforced by support groups, conditions us to believe in tooth fairies, Santa Claus, epilepsy, etc. while distracting us from picking away at the symptoms, finding underlying causes, and overcoming them.
 
Blonde Angel said:
Just remember 2 things about Autism,
1. Don't under estimate their perception to what/ who/ where's ... around them verbal or not verbal
2. They problem solve differently and pay attention to finer details
Click to expand...

That's absolulety true. When I was in a coma, people were talking like I wasn't there. My brain would wake up sometimes and I could hear what was being said.I couldn't respond, though. I still remember the hurtful things that were said.

1. The doctor told my husband to get my funeral ready because I would be dead before he got back from his vacation.
2. The doctor then explained to my husband about where he was going on his vacation and asked my husband for advice about his vacation.

I got mad and I thought to myself, I will be alive when you get back and I will be alive. Then I went into seizures.

When I got home, I asked my husband if that was true about what I heard. He said yes and it hurt him deeply that the doctor said it.
 
@ Ruth.
That would have been a horrible experience being in a coma and your sense of hearing still was there, the Dr you had certainly was insensitive to the fact that it's been proven that the sense of hearing is the last sense to be retained.

We've all heard of cases of some people who are in ICU "out of it "in a coma.. But when they recover they can recall some conversations by staff, and family/friends .
 
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Just something for those who do believe in the power of music..

A local university where I live has been undertaking a study showing that classical music can help reduce stress and harmful behaviour in children with severe Autism. A Clinical Psychologist carried out research on a morning school bus run, taking saliva samples of 30 kids. Not sure how well the kids cooperated in giving their saliva that would of been challenging.
Anyway, a bus simulator was built at the university, then the research moved to a real bus trip.
The recoding of Beethovens Piano Sonata no 8 op. 13 was played, apparently there's video footage of this bus journey which presents that this music seemed to reduce harmful behaviours such as head banging, became still, focussed and relaxed.
The psychologist is quoted to say...
" this research is giving us quantifiable measure to say classical music has positive biological and behavioural effects children with sever Autism."

Although this is a local study in Oz, I'm sure this is relevant to kids with Autismall over the world.... But also to ANYONE who needs to de stress .
The research was written in my Disability Services Commission update news letter that I get 3 monthly... Sorry no links provided for the video.
 
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Hi Zoe.
A couple of things about the diagnosis labelling.
It's a mix of good and bad stuff really.
In Oz, when one gets a diagnosis of Autism, especially in their very early yrs, I'm talking preschool years, it actually allows the label be recognised that" hey this kids needs early intervention via various therapies."
If the kid is not diagnosed, well they don't have the eligibility to some Goverment funding for Early Intervention Services .
So, families do need that diagnosis, yes that label to get supports with education, therapy eligibility, social security stuff.
In saying this, yes, I agree,that there's been instances of diagnoses is misrepresented at times, because the child doesn't tick all the diagnostic criteria, which leaves some families in limbo and stress.

Accuracy of diagnosis ?
Yeah I do wonder for some situations in the global community of special needs.
And yes, it's not just the Autism, what about other illnesses like E?? What about Dyslexia, ADHD, Allergies???
Why is it that some people have a seizure after they've smelt perfume? How exactly does the sense of smell trigger seizure?
Why do some people who do have the diagnosis of Epilepsy have other chronic medical issues ? What's the links, common denominator is there some holy grails yet to be investigated that still remain undiscovered..?
Yeah I do think so...
 
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Zoe.
There's the need to look at " why"

An eg.
A challenging behaviour.
My girl will pull at her hair when she is frustrated by something or someone.
It was found eventually that when a certain staff member from school was working with her she began displaying this behaviour not just once but consistently. Guess why? This lady had a particular perfume that irritated my girl . The problem was resolved when the staff member no longer wore this perfume .. I also make sure I bathe myself in no floral perfumes.. Others seem ok.
Well a Paeditrician would look at this if this issue was not resolved and try to put her on some meds for " behaviour control" put her on more junk.
 
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What an AMAZING group of posts! I am nearly -- not quite -- speechless. The whole idea of "behavior control" as applied to a child makes me sick. All it means is that we -- The Adults -- are not doing our job. Our job is to grasp what the child requires to be at peace with him or herself so that his or her business of growing up can proceed. To my mind the nightmare of an idea like "behavior control" is that blame is put on the child. And Ruth's doctor. What is there to say? Shame, shame on him. The children on the bus who were awash in Beethoven had a wonderful ride because they were engaged on a high intellectual/emotional level that was worthy of them.
Last month when I had the VEEG the woman in the next bed had just had half her brain removed. When I arrived she was not saying anything or even moving. In my ignorance I thought the situation was dire. But there were workers coming in and out and all of them were softly talking to her, as if they were calling to her to come alive, that it is pleasant to be alive and talking and being with each other. And in the time I was there, that is exactly what happened. She came alive and she talked - she said a few words - more and more. She smiled.She and I giggled some. And the workers continued to beckon. They were so wonderful. And she was also so wonderful.

And yet there is our other side!
 
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Blonde Angel said:
Hi Ruth & seagull.
Just remember 2 things about Autism,
1. Don't under estimate their perception to what/ who/ where's ... around them verbal or not verbal
2. They problem solve differently and pay attention to finer details
Click to expand...
Blonde Angel you are correct. I have to constantly remind people (including myself sometimes) to stop talking about my grandson in front of him. Even though he can't talk he understands and it is rude to talk about anyone as though they aren't present.

He is 5 1/2 and has taught himself to read, write, spell and do math, and how to substitute words. He wanted to spell rhombus with his plastic letters but didn't have the correct letter so he wrote diamond instead. He is now saying an occasional word.

He has many health issues but so far epilepsy isn't one of them.
 
MAB
I went through a very distressing experience while my girl was attending one of two respite centres.
The carer that I employed to collect my girl from school kept reporting to me that my girl was getting distressed every time she would take her to a very well known organization that provided a brief respite. So we did the usual provide visual supports to prepare her but still when she was aware of where she was driven, she would cry and virtually drop herself on the front lawn of the respite building sobbing sobbing... This was a behaviour that happened consistently.

Now, the carer also, drives her to another respite once a month for a weekender break. The difference in her behaviour is amazing. She would smile as she was being driven there, and she would virtually power walk pulling her respite bag with her and can't wait to get into the house.
So, the alarm bells went off...
We decided to video tape these behaviours and I asked the respite where she hated to go " what's going on?" We could never get a straight forward answer so, I decided to remove her from that respite and listen to what she was telling me...

What both the carer and I noticed , now that we thought about it clearly, we realised that the staff on checking in my girl never ever said " hi " to My girlor welcomed her but instead they would talk either to me or the carer about my girl.. Now how rude is that!
No wonder my girl hated it there, they did not treat her like a human being.

The difference in the atmosphere in the other respite is amazing, the staff say hi and give her hi5 and give her a great welcome and there's interaction right before the carer & myself, they cook wholesome foods and give 110%, take her on community outings .
This girl comes back with a smile on her face.
So, I know my girl is being taken care of well and there's respect for her also.

This incident taught me that I need to look into my girls behaviours very very close, if she's not happy WHY? What's going on ?
 
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3 common myths about Autism that needs to be stamped out in the wider community..

1. People with Autism are not affectionate
2. People with Autism do not desire to engage with others
3. People with Autism just want to be alone
 
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