Anyway IvIg is better than dying from the everyday bug up all people’s noses as they walk about carefree in their lovely immunity sneezing into the air. It is really sick when people decide to go to war with those with immune disorders JUST because they hate that its happening in someone with autism. But you see the reason is they fear that those like us will equate autism with illness, they are being protective of the label – their version – so they don’t actually even see us, the person, and they certainly have no idea of the health issues, experiences or risks. If they did they’d spin out.

So what’s important is to respect their fear, knowing they are still learning, they just believe they already know everything, but of course none of us do. But respecting their fear means advocating about immune deficiency and how it doesn’t reflect on all people with autism, that we are part of a particular group. There is literature in the immune deficiency world about early Primary Immune Deficiency contributing to developmental disability and sometimes autism, so its important people understand that this doesn’t mean people get IvIG for autism… in fact its not allowed, you have to have immune deficiency or IvIG is no go. So their fear is about ignorance of immune deficiency and all of its protocols. They imagine parents of healthy autistic kids being forced to get needles and transfusions out of the parents fear of ‘difference’. In fact the doctors are luckily not able to be that negligent and don’t waste precious blood plasma on healthy children… its for those with cancers and immune deficiencies that put them at risk of cancers and death from simple microbes others have and can develop immunity to (in fact one of the protocols is a test to show you can’t develop immunity to those microbes).

If parents of sick kids with autism understood that their child’s autism was secondary to the immune deficiency and that what they meant by THAT autism was disabling co-morbids, extreme mental confusion and sensory perceptual chaos and a brain being harmed by an absence of immune function, then that would help the haters chill out because they’d know they are hating the parents of ill children.

From Gupta’s studies the rough incidence of autistic kids with IgA deficiency (one of the signs IgG subclass deficiencies may also be present) is that 20% had insufficient IgA to fight their bugs or signal enzyme productions to properly digest proteins and 10% had no IgA. So understanding that our groups constitutes only around 10-20% of those diagnosed with autism should stop everyone presuming a) that any of us think all autistic people have immune disorders or b) that ours is the only type of autism or c) that health related secondary autism is the same as non-health related primary autism. At the same time because primary immune deficiencies are often inherited those of us with them were born predisposed to them and their developmental consequences so if that pans out as ‘autism’ we are as ‘naturally autistic’ as those without health issues who were also born that way even though their autism is different. In other words each type of autism is as valid as the other.

I have worked with 100s of kids with autism, a percentage of whom became formally diagnosed with immune deficiencies. Those kids and their families deserve to not be stalked, harassed or emotionally tortured by political zealots. Equally, those families need to understand their child’s health issues to not equate to ‘all kids with autism’.

One of the big problems is that when an immune deficient autistic kid gets dramatically less autistic as a result of health related treatments, the families of healthy kids with autism get pressured that they should put their healthy kid through the same (in that case unnecessary and costly) treatments. That is also ignorant and has to stop.

stay in touch Lewis. If you need an immune deficient pal, I’m here.

I’m sorry you’re not feeling well. You are a nice person and you deserve good health. My health is pretty bad, too, and it looks like I am going to have to start going to Sick Kids Hospital in Toronto to re-start IVIg infusions every month. It takes up about 4 days every month for IVIg and they’re really long days.

It really annoys me just like your health annoys you. Sometimes bodies are weird things. :-/

I hope to read more of your poems soon. And my mom says your movie should be coming out soon, too. That will be good to see.

Lewis “Codeboy” Schofield

Unfortunately, the cyberbullies I’m dealing with at the moment include people who claim they are “Autism Advocates.” Rather than look at the facts of the matter, they are all jumping on the knee jerk bandwagon.

And while they all loudly proclaim that they care deeply about children with Autism, they have absolutely no compunction endangering MY child who has Autism as well as an incurable life threatening illness that refuses to go into remission, all for some ridiculous vendetta.

You know the child I’m talking about, Donna. You interviewed Lewis Schofield for Irked Magazine in 2007. I remember how much he enjoyed doing the interview with you and how delighted he was to read it once it was published.

I wonder what would possess people who are involved with AWN and ASAN to act this way towards a child with Autism and his mother?

One would think that they moreso than most other people would understand that cyberbullying is not only wrong but against the law.

but this time i knew you were going to be ok

i think i knew that because i had read some of your stuff and could see you had the sense of “the radiance beyond” without sounding too courny

so rare

but hatred arises in the absence of that sense and unfiortuantely a lot of spectrum are locked into the closed cabinet that excludes any sense of that and that makes them dangerous

fortunately to themselves as well as you point out and they are best kept distanced

i have been listening to bukowski on youtube recently and hes quite enlightening

“the genius of the crowd” reading

http://www.youtube.com/watch?v=gifEn61dZBc

its all about control and other owners controlling or censoring in the favour of those who r anti you

your reply on january 22nd is a good piece or writiing

actually i half expect you to freeze up, all the autism/aspergers etc boards ban or harass me as well

dunno what it is, too much truth perhaps? compeditiveness, brain bending writing style?

a number of factors

i do feel however that some of those who posted agreeing with your sentiments are double faced and are the first to ask for my removal from a board

this is years and years of observation

Donna *)