I 100% believe in early intervention, not necessarily any particular kind.
1) because our kids aren't getting a natural raising (society backs off and does not understand enough for it to be natural)
2) The parents who have all done a ton of study like me ( or accidentally like mother in law) have all been succeeding because of steps that work that are equal to early intervention. Not all parents have the time (must work to get bills paid), energy or enough understanding of the importance to make it priority.
And with other children who are severe and not had early intervention we will never know their potential.
One thing that history screams out though is institutions which equal drugging, often abuse and definitely no intervention have caused the worst outcome.  And more recently trying the opposite of inclusion, assuming competency, intervention, love and patience has shown massive results.

First ever diagnosed autistic person

First ever diagnosed autistic person -
"he has many friends in Forest who are quick to defend the man they know is different but brilliant"
http://www.disabilityscoop.com/2010/09/15/first-diagnosed-autism/10234/

Well if only good things happened for the first to be diagnosed why can't we expect that for all?

The positives are what will drive happy families, happy out comes and independent living.

Too many neurons not too little

At the very beginning of this autism journey I learnt very early that the "problem" was neurons don't or don't die as easily in the autistic brain. Ref http://www.scientificamerican.com/article/courchesne-gene-expression/

So I asked a question in a group saying so the problem is like talking to a friend across an empty room for NT people as opposed to talking to a friend in a crowded room with your friend across the room.  This still seems to be the best way for me to explain someone on the spectrum..... Depending on how severe the person is, basically the more people are in their crowded room.  So how do you help someone learn on the spectrum, well one train of thought is ABA and if done to the letter you are basically only telling certain people in their crowded room the answer to pass to their friend at the other side of the room.  The pros with this idea is that it will teach a person on the spectrum, the other problem is if not done in exactly the right way the stress starts showing and the whole system breaks down.
So how do you best teach a child on the spectrum, easy EASY, you teach pass that message on to as many of those 'people' (neurons) as you possibly can....actually our ASD kids naturally work on that theory, it looks repetitive to a very untrained eye, IT ISN'T.  They are spinning that toy at different times of the day, in different weather, when people are talking, when the room is quiet, when you have guests over, when you go out, when the TV is on.............these are all slight variations that help our kids learn.  Please please use this opportunity to teach your child, sit with your child while they are spinning, make as many connections as you can, branch them out, sing while they are doing their "obsession", talk to your child while they are doing their " obsession" , play with them by spinning with them.
This has been the absolutely most important part of helping and teaching we can do.
In my humble opinion.  And a reminder "TOO MANY NEURONS" means our children's problem is not lack of brain power.
It seems all too simple, it explains why on so many levels, I have reevaluated this basic theory of mine over and over and I can't see how it is incorrect.   My question is why if it is all as teaching how our kids learn why aren't the majority doing this?

We all find it easier to learn if we are interested in the subject, like our hobbies ("obsessions").  It seems to be what our brains are strongest at so we are more open to learning.......I hope that makes sense.

The importance of mirroring visual information figuratively and literally for a child on the spectrum.

Mirrors and why I think they are so important, other than helping our kids learn their own existence in time and space, and in doing so it helps with our kids learning to dress themselves (slowly Edward is getting better at this)
Edward's first impression was of someone different that is why I used it to help with introductions and conversation :-) when he is getting dressed upstairs I say hi mirror Edward and mirror mummy :-) how are you.  Edward can you wave to mirror Edward? .....blah blah blah blah blah. The great thing is mirror mummy and mirror Edward always seem happy to smile back and wave back :-). There are so many interactions our kids miss out on because of other peoples lack of treating like they are worth the interaction, we need to make up our our ways of teaching them basic societal politeness in a less stressful environment.

Reversing or curing Autism

Hubby was never diagnosed he is quirky and I love him to bits, no one now would guess that he  started talking at 3 and that his mum was worried about him.  No one now would guess that he slept very little and that he flapped and spun.  He was accepted as being Richard, his mum sat him down and explained social stuff to him.  His mum encouraged his "obsession" of letters and reading.  He had NO ABA, one primary school did not accept him, the next primary school realised he was bright.....just saying, I believe he is still on the spectrum.  Looking back mil accidentally did everything right.  And looking back at my history I am either boarder line ASD or am on the spectrum.  Is that a bad thing to be different from the norm??? We have things to work on for our son, we love him very much and we will raise him to be a good boy, help him with his weaknesses and encourage his strengths.  This is a whole family who wishes not to be cured or reversed.  Xxxxooooo

wow - Carly, I am reading your dad's book and you are teaching me so much

A page out of the "Carly's voice" book that I think ALL ASD parents need to hear and know.  Please share this to anyone you think NEEDS to know this.

The absolute pure definition of don't judge a book by it's cover.

I feel people need to know this, this page shows that what in most circumstances people would see someone not listening, not wanting to listen, not capable IS actually listening, wanting to listen and soooo very capable.

I believed that children who were severe with autism were just as capable (if not more capable for not having an easy straight forward life), but could not find real solid proof and this is even better than I presumed.  If Carly is stimming this profoundly and still taking in information better than your average person, it is probable that a whole heap of children are being misunderstood and diagnosed as "cognitively delayed"

I just was stunned when I read this I mean my son can listen and take in info when he is running around, spinning, flapping and dancing.....but I was wondering how many others like me had no idea that Carly was doing all these sorts of stims while taking in what she was hearing.   It sounds reading further into the book she is using her stims to be able to take in this info, just like my son moves to hear.

Autism / ASD disability?

When I say my son has a disability - I mean it purely in the Clinical sense and a social one.  At  an appointment at the hospital I have to hold my son down for the very basic of examination (that breaks my heart).  In the mall I have to stop him from running out of my sight because he does not have verbal skills to say "I have lost my mummy" or even yell for me :-( , he is likely to run out in front of cars.  We went to a friends birthday party and this reminded me of how ASD my son is...we walked into her living room with all their family and friends and Edward just started screaming and having a full on meltdown.  If feeling nervous he can recite the alphabet, count or spin.  He is just getting conversation communication at 3 years and 3 months.  Edward has pica still.  And he is extremely intelligent but it took I think 5 visits before the other ladies at our little class we go to weekly got to see why we were there when Edward at 3 picked up a red felt tip and wrote red with it, picked up the page and said red, then turned the page over and wrote his name.  Preconceptions need to change in society for my son and other children on the spectrum to flourish and succeed.  In other countries 2e (having an ability and disability) is diagnosed.  Here in New Zealand it is ignored, definitely not diagnosed.  I may as well be screaming in the mall pink elephants are about to trample you than someone believe (before proof) that Edward is gifted.
I have been told categorically that if I say that my son is gifted to people that supply services to help him with things that need a little help I can forget any help.
But I refuse to tell people that my son is just broken.  I don't see Edward as broken.  It is not fine sailing but I love my little man to bits and the highs far exceed the lows.

autism /ASD experts

Us ASD parents need to stick together, if experts don't know the why's how the heck would they know the answers?   - they just are there to annoy me and confuse other parents.

autism / ASD and echolalia

An explanation of echolalia  and why our partially verbal children use it to start talking.

It's just on the tip of my tongue, it means it was the first made?  Can you help me find the word please?
"Original" you say? Yes that is the word I want.  "Original"

-----------------------------
I am saying "J would you like a ball?" and then J says "ball" ------
He may as well be saying 'ah yes thanks mum that is the word I am wanting' "ball"

------------------
A lot of us echolalia -
"The computer crashed!!!!!" "Crashed?"
(Asking for an explanation)
"Do you want an Porsche or a Lamborghini for Xmas?" "Hmmm Porsche or Lamborgini?"
(A thinking/processing out loud example)

Autism / ASD - where to start

In a group someone asked how would we describe autism. - This is my best answer.
" Difficulty with verbal and non verbal communication that impacts on everything else.  -  In many ways the more severe children remind me a lot of the first part of the movie "Helen Keller".

And that was achieved only after connecting / bonding with her and teaching her how to communicate first (with a ton of patience and love and acceptance :-) )

I found while connecting it was a great time to sing and talk. As a verbal child said "I can't hear and look at the same time"..... So an excellent time for your child to hear you while they are in their comfortable place and in motion...... Kristine Barnett did a lot of her teaching with her son while he was in a swing.

Lecithin, fish oil and vitamin e for autitory processing disorder

At the moment Edward is on probiotics, still on formula, fish oil, lecithin, creatine (in the more digestible format) and ubiquinol ( the more digestible version of co-q10) - and I have been asking other parents if they have been using lecithin as it seemed rather coincidental that Edward's speech seems better the last few days I have been using it....I have just come across this - from http://www.diannecraft.org/improving-your-memory-with-lecithin/

Regarding soybean and the amount of oestrogen it contains that may be an issue for males.  We are presently using the Thompson's super lecithin which is from soybean with no warnings on it.   Soyabean is also the product in soy sauce and that has not really hindered Japanese men.  But I will take it on board.  Lecithin can also be derived from sunflowers, corn and egg.

As an ASD parent please question EVERYTHING

I think that is the absolutely most important thing for a parent with a child who has been diagnosed asd.  If "experts" tell you that your child is mentally handicapped and you have even an inkling that that does not sound true then please please question what they say.

I think I was just extremely lucky that every time I heard or read something that said asd people were lower in intellect it did NOT sound right.  Also just before I got married to hubby I was angry and asked google a question, it brought up aspergers male.  I read it and said "Honey they have listed your personality", he said funny you say that, when I was at university I found that out and told my friends, they kind of ignored it and we carried on as normal.

When I took Edward to see the specialist I was expecting a diagnosis of aspergers, not autism.  I thought my son was intelligent and quirky and showing all the signs of aspergers minus delayed speech.  But hubby and Mother in law said hubby was slow to speak.

After diagnosis and the shock of not understanding Autism at all, I kept coming across things that really did not ring true.  I could not believe the experts.  I was lucky to come across the book "The spark" by Kristine Barnett.  And Edward was 2 years and few months by then, while reading the book I could see some similarities between Jacob (Kristine's son) and mine.  So instead of doing what the experts said, my first plan of attack was to find Edward's love.

Without the book I have no idea how bad it would have been for my little man. So with lots of YouTube videos, a patient hubby and tons of toys checking his body language to everything. Well Edward is now 3 yrs and 3 months, he loves the solar system, gravity (still checking to see if the next thing will fall down), maps (inclusive of google maps) globe, swings, the trampoline, letters, numbers, words, spelling, writing, dancing, jumping, spinning, flapping and he is still only partially verbal.....not to bad for a moderately autistic little man also diagnosed with developmental delays with the paediatrician telling me there was no way of telling what the outcome may be.

What is the difference between Aspergers and Autism?

If Aspergers was still being diagnosed Edward would still be autistic.

Here is the long version (Dr. Catherine Lord talking about being on the committee that made the new DSM (Diagnostic and Statistical Manual of Mental Disorders, 5th Edition) (DSM5) for Autism and what they did) of my short paragraph.



Before DSM5 came out the main differences between Aspergers and Autism was.
1.speech delay - whether you had fluent speech at 2 (Edward still does not at 3)
2. Which state you lived in/ who the clinician is.
3. What your IQ is - and the IQ level was different in different states and by each clinician (Edward was diagnosed with developmental delays, his intelligence was almost fully masked by his ASD at that stage)

So some people were being bounced around both diagnoses. And in the states people were getting services if diagnosed with autism and dropped off services if diagnosed with aspergers.

Teaching Edward to look where I point and clearer speech and getting better at communication

Edward is pointing and his speech is getting better.
Trying to teach him looking where I point, it has to be at something he wants to find and often I get down to his level and use his arm and mine at the same time......we are getting there.

How we communicate with each other while Edward is partially verbal and his learning abilities

This is how Edward asks us for information and learns /absorbs info. I have had to learn Edward language and I use his loves to encourage speech. I thought this might help other ASD mummies.

I just love his little laugh when he is starting to get something.

Magnetic alphabet, it is on both android and iPad. He was totally just loving the alphabet but he has started using the pictures more and more too. I think Tasha put me on to it.

This is one of the major reasons why I don't believe in too much technology. There are no games on Edward's iPad other than educational games. This is why I feel that classes should be embracing our children as they are and supporting how they learn.

It is this app

https://play.google.com/store/apps/details?id=it.dotnext.magneticalphabet

Edward was not feeling well today (8th October 2014) but decided to do a bit of writing and has not done this for a while, so it was lovely.  Interaction when he is doing what he wants to is always great for both of us. I cut it down from 15 to 8 mins, sorry it is still long.

Thinking out loud - My thoughts on autism and pretend play

As I am watching Edward watch the Bumblebee pretend play video, he enjoys watching it, but he uses little pretend play. 'Experts' believe pretend play is so very important to learn. I think the video helps Edward learn how other kids learn. He is obviously learning without using pretend play. Pretend play is a way of physically imitating others. Edward learns more by looking repetitively and via brain processing. Why would anyone think Edward's way is less than a typical child's way? It keeps me on my toes though, to help him progress and understand things in this world I have to find videos and go places that he can learn by visual learning.....repetition in visual learning instead of a typical child learning by repeating via pretend play and listening.

I am terrible at pretend play. He does tiny bits like pretending to talk into a phone.... To help him when others want to pretend play with him I reword it. Like when we were doing one on one teaching for a while and our lovely teacher produced a stuffed dog and said "what does he say?", Edward looked down with a smirk on his face, I knew exactly what he was thinking. I said "honey if the stuffed dog were real what would he say?" And Edward said "woof woof"

Regarding the supposed importance of pretend play -

What are our kids learning by making pretend cookies? Pretend play is a very new and in my opinion wrong assumption as it stands now. Typical children used to do it naturally to learn by imitating their parents, but the children in the spectrum are leaders not followers, they will watch and learn fast then do their own thing.

I know many a typical child that does not seem to have learnt a lot through pretend play as children. I think this is the 'expert' bug again. I can't imagine Einstein or Jacob Barnett being more successful because of pretend play. But if you are a child that learns better by constantly having to have physical and verbal feedback pretend play would be very important.

I think people totally underestimate our ASD kids because of this belief they are dumb instead of the fact that they try teaching how verbal children learn. When you teach as they best learn (well in Edward's case anyway) they can adapt these ideas fast, they watch the videos they see real life examples and they make their own perfectly good adaptions to suit.

I use real life stuff to work on communication. Edward loves his little house but he does not play house. We use it to learn "this is Edward's house" "Edward is in this house" "Edward has shut the door", "Edward has opened the door" and Edward will stand there and open the door and say "open", and close the door and say " close". He initiates what he wants to learn.

Well when my son stops learning because I have been so careless to not force pretend play on him I will reconsider my teaching.

If pretend play is life or death, chance of living a productive life and I just have to teach it to my son, give me proof. I see many ASD kids growing up just fine without pretend play... So is it really that important? But please 'Expert's don't talk down to me and say 'it just is' when there is living proof that seems to defy it.

***********
Addendum - I have just been asked some great questions and my answers maybe handy for other parents.

We had a foster baby who would try to play with Edward and would parallel play. We are especially lucky at our kindy a undx (suspected) little girl has taken a liking to Edward, when he goes for the 2 hours approx I have seen her imitate Edward's movements wait for him to enjoy her company and she will natter away and include him in her play . So our own therapist. He gets lots of time to visually learn at under 5 gym on Mondays, Tuesday is kindy, Wednesday is creche at our local mall with excellent qualified kindy teachers, Thursday is small poppies, Friday Creche again and Saturdays music and dance class.

Edward pretends he is letters and numbers and gets the whole family involved in the H with him being the bar between us. He has pretended to be me when he was making fun of me tripping. He is pretending to be us when he uses the phone. ---- different pretend play. Pretend play more to learn more basic communication.

If people allow their children to play with our kids.  it makes a massive difference for our children's better outcome.

 I am happy to work at Edward's pace. He maybe at new entrance (start of primary school level) in scholastics, but I think he is actually using toddler level skills to understand pretoddler communication and social skills.

Autism and eye contact

If you want to get an idea of autism - Try talking to a friend for 5 mins looking into their eyes and no where else, it is a great way to understand how hard it is for a person on the spectrum. But it is that much harder for someone on the spectrum.

Edward is happy to look at me when he is happy and relaxed. I don't force the issue. If he is comfortable, relaxed and enjoying being around me then there is no anxiety connected. It makes me so happy when I see him do it because of my previous comments.

Mirrors for extra visual feedback

This is how we change nappies now, so he can get more visual feedback on what I am doing.
Addendum-
I am running out of ideas. I put the top tile on the wall ages ago to help with Edward's verbal feedback, he sings in front of the TV and this is just to the right so he can (and he does) practice words and looks at his lip movements. I still had another 4 tiles, so I added 2 more tiles 

I put them down at Edward's height where he likes to be. At first I put the alphabet and numbers on them to draw him in.....now most of the time they are clear, other times they have messages on them.

Dated 8th Oct 2014 - PS, I am getting more recognition already as in he is starting to give me a hand dressing him and he is looking at me dressing him. Yay  a good start at least.

Neglecting my blogger

After seeing a comment from another ASD mummy also looking for answers I realise I have been totally neglecting my blogs here, since a lot are going up on Edward's World Face Book Page  https://www.facebook.com/EdwardsWorld?ref=ts&fref=ts, and on the Edward's World YouTube Playlist http://www.youtube.com/playlist?list=PLt1mf23I6t9S2SzEwJrjlsSlGIgdr4LQy .
There are how ever advantages (Search is way better on here that on the facebook page) to adding the better posts also to this blog so I will do a bit of a catch up.

Autism and low intelligence and over diagnosing

I think the ASD and other supposed brain "dysfunction" difference in thinking is what can make our children look at the world differently and help make it a better place.  I can't change how I think.  Temple Grandin (severe side of the asd spectrum), John Nash (nobel prize winner with schizophrenia), Jacob Bennett (ASD regressed from talking to nothing in his 2's), Raun Kaufman (diagnosed with classic autism), Carly Fleischman ( writer of 2 books, presently going to mainstream university and still non verbal, considered retarded, behaviour calmed amazingly as soon as she was able to 'voice' her feelings etc), Dr John Hall (diagnosed severely autistic and retarded), parents now are trying harder with their ASD kids instead of giving up on them and many are starting to see that experts were wrong when they said that their child would never be able to do this or that.  Many experts have been extremely incorrect about the ASD child's intellect.  Children originally diagnosed severe and retarded have made massive strides into the mild side of the spectrum with people constantly saying "well maybe they weren't in the first place".  This is my experience over the 1.3 years.  So if kids are going from severe to mild or even staying severe and writing books with the help of technology where is this so called wall of misdiagnosis?