The Wallpapering Society

I applaud Gerhard for trying a novel way to raise both awareness and money for autism. I fail to see how his efforts can be seen as stupid, appalling etc. The little girl behind bars is a very clever way of illustrating how children with autism have barriers not only to learning but to participating fully in life because of inexplicable prejudice and ignorance.

If enough facilities were in place for children and adults with autism it might not be necessary for those who are concerned for this population of children to find “creative” ways of raising much-needed funds for them

Jenni Gous says the image is a
“…way of illustrating how children with autism have barriers not only to learning but to participating fully in life because of inexplicable prejudice and ignorance.” I don’t see how she works that one out. Most people seeing that image will have their idea reinforced that autism means being “locked in one’s own world”. They will see the bars as a self-made prison. If the image had the words “prejudice” and “ignorance” as the bars to the prison, then perhaps it would have conveyed the message Jenni suggests.

Something like this would never have happened in modern Downs communities.

Claire, here are the facts:

“do you know this for a fact? Or are you just assuming it was a group of NT’s???”

I know that as a fact. There is no autistic representation on either AWC or Autism South Africa, even though I have made myself available for election for the latter and my nominator was politely advised against nominating someone from “outside”. They have not asked ANY autistic person for feedback or input on this (or any) of their initiatives, despite me making them aware of this shortcoming earlier this year.

AWC consists out of sixteen NT employees and two NT directors. So, they provide no employment to any autistics. They support a school with less than ten pupils and two adult houses with six or seven inhabitants. So, in numbers, they are actually employing more NT people than helping autistic people. These are the facts.

I would love you to point out other “errors” so that I can systematically clarify them for you with the facts. Please go ahead.

Furthermore, there is no open communication from AWC with regards to the exact so-called “international feedback” that they got, despite several queries made to them in that regard. In fact, I got it on authority that local feedback was definitely not all positive, when they first started the idea and the same concerns I had, was voiced to them from other professionals in Cape Town. They chose to ignore it.

Those are the facts. Confirm them for yourself, perhaps that would be best.

I absolutely agree we should stand together, but I won’t let autism be portrayed in ways that would harm autistics - it’s like saying all Americans must now stand together but then expecting that they must not speak out against the war, if they disagree with it (or vice versa).

Just stating my facts are incorrect and not clarifying that with what you perceive to be the correct facts makes no sense. I am not bending the truth to fit my argument. Those are really the facts, even though they are uncomfortable. If you think differently, you should state why and come with evidence. My evidence is sourced from AWC’s website (with regards to their funding drives), the interviews they have conducted (the number of employees they have), email dialogue between them, myself and other autism organisations in the Cape (with regards to their lack of autistic inclusion and so-called positive support they received before they started the initiative) and conversations I have had with other autism professionals in Cape Town (with regards to the not so positive feedback they actually got, way back then). If I am still wrong, you should come with your evidence and point it out, not just vaguely state that my facts are still wrong and then try and be the “peacemaker” by saying you’ll let it slip. That is quite patronising and definitely helps nobody’s case.

Neil, I’m afraid you misunderstand, like most non-autistic people. I honestly doubt that he had any other intention than doing good. The intention of doing good coupled with ignorance and unawareness is not always a good thing. If he had an open door so that I could have told him these things in private it would have probably been resolved peacefully and with mutual benefit, but he slammed the door in my face and ignored any of my comments. In his case, ignorance is therefore a choice. His need to express himself as a prisoner of autism is bigger than his care for how society may treat his daughter one day, as an adult, if the image of a prison was the only one embedded in their minds at the time.

Hi Julie - you have never entertained any discussion with regards to this with me, this is the first time anyone has bothered to respond to me, from AWC, apart from Gerhard’s initial discarding words.

You have been to date unable to name the autistic adults that you consulted as well as the organisations that responded positively to your initiative. I think you are blowing them out of proportion. What about the ones that responded negatively? Or the ones you failed to consult? There is only one representative organisation for autistic adults in Cape Town, and that is the Wallpapering Society, and Gerhard was made aware of us earlier this year and chose NOT to consult us (even though he claimed he would, at the time). If he has an AS chap that regularly comes and visits him, that would probably be the same chap that Gerhard sponsors in Sprigg house, who benefits from Gerhard’s initiatives which I also rejoice in, but it remains the house where AWC also decided to cut off Internet access, which is the same as taking away the wheelchair of a walking disabled person - another email from me that went ignored by Gerhard. So for all the good you do - which I applaud - there is a gap in your own education with regards to autism that you just refuse to admit to. And you refuse to ask for input.

With regards to a better idea, yes, I think I can do better. I think a few simple adjustments to the prison would have gone a long way. For instance writing words on the bars like “Society”, “Ignorance” “Lack of Tolerance” etc. etc. Instead, the bars now mean “Autism”. Also, perhaps someone that is more aware and knowledgeable about autism inside would have gone a long way. Anyone that claims an autistic that is having a meltdown is doing that for absolutely no reason is completely misinformed and is spreading a wrongful message. There is always a reason for a meltdown. Gerhard may perhaps just not be seeing it. Also, words like “devastating disease” is backwards and not keeeping up to date with major successes being achieved all over the world by autistic people (including a Nobel prize - who knows how many other Nobel prizes have been won by the undiagnosed). If you come back with a “but those are high-functioning, priviledged autistics” then YOU are the one that fails to see that potential in your kid. With an attitude like Gerhard’s, that is no surprise. She will consistently keep performing to your expectations.

So, Julie, thanks for at last responding. You have ignored me to date. I am here. I am willing to help. I am already helping. Raising this issue boldly while your organisation is completely unaware of potential other views out there is important, even if they piss you off. The more you ignore an issue, the more it will come back into your face. Let me know when you will have that discussion - the one that you are now ready to end, which we never had. I am open to it. And I’ll take back things that I have said that are untrue, but if the facts are not clarified and proven by an AWC official, how can I ever do that.

“For instance writing words on the bars like “Society”, “Ignorance” “Lack of Tolerance” etc. etc. Instead, the bars now mean “Autism”.”

Adi, I found your site through Kristina’s. I really like it! I do like your suggestions above, I think it is important to clarify what the prison is, it changes the whole tone of the project from pity to helping empower autistics and educating society. Best of luck to your educational efforts!

@Bev:

“Just because they found someone to support this misguided effort, that doesn’t make it right.”

The converse holds just as true.

“Just because they found someone to disagree with this fantastic effort, that doesn’t make it wrong.”

I have just come across this site and briefly read all the comments. As a parent of an Autistic son who will soon be 21 I would love it if one day my son could say “I love you ” to both my wife and myself. There are no facilities available - we as a group of parents are funding one with the assistance of AWC ( non-financial ) and desperately need help financially so we rely on any initiative to assist us. Hopefully through this initiative we will receive some finanacial assistance. Without this we could well close and who will assist us then ? Remember the Spectrum is incredibly broad - I only see very high-functioning in this forum. Incidentally - how do the “Aids” organisations manage to raise so much funding. Not self-pity - no never! There seems to be a few hidden agendas here.

Adi,
I have read your post, comments and all followup comments to here, including your comment on Tertia’s blog…

After reading everything & knowing quite a bit about AS (my degree is in teaching children with disabilities) I have discovered a trend in your comments/post.

Each time you come back with negativity about how YOU were not consulted.

This fundraiser is not a personal attack against you, despite the fact that you feel the pictures and words (or lack of) are. You were not consulted by Tertia before she posted, you were not consulted by AWC before they proceeded and are demanding answers.

Imagine this.. you are the architect of this doing.

Lighten up, be less negative and perhaps even step back and allow people to do things that they may know more about (fundraising vs the disorder) and they will be more willing to accept feedback.

Hi
An interesting post, i just feel that it would be better to say that you are a person suffering from autism, not an autistic person.

Hi There.

I think that ADI has some really good points. ADI is right everything is being done to help the autistic individual and I think that is fantastic but what we need to realise here is that we are helping them but not including the autistic indivdual in the decision making processes. Just because my son doesn’t speak doesn’t mean he is not entitled to a say about what goes on in our house. His opinions and feelings on things matter just like ours do. Surely the autistic person is entitled to validation when it comes to what we think is right for them? They are autistic and we are not so we need to value how they see us and the world. Autistic individuals need to be recognised for there talent in being able to see situations for what they are and not being emotional about it. Adi is just seeing it is for what it is to the autistic community. I am afraid she has a point. It is almost like we speak at the autistics and not with them. We don’t own them and never will. They deserve to be heard. Their opinion matters. They have a talent to see things in a different way to what we do. What’s wrong with that? Who are we to judge? We can not judge if we don’t know, and who better to learn from that the autistic community. I learn from my son each day and he learns from me. Everyone is not the same and that is how it is. We need to recognise each others differences and build on the strengths each other has too offer. The only way to prevent hostility and excile of each other is to encourage open dialog between the NT’s and autistics, Adi was not afforded this despite coming forward. That is wrong. Most autistics are far cleverer than any NT I know and that needs to be recognised and most of all respected.