making your own media representation.

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I have no idea if this is the correct place to place this, but My family has been affected by severe Autism for 14 years....my eldest son, has decided to do a daily video diary,about life with his Autistic brother, and upload to his youtube channel. The representation of severely autistic individuals,and their family is poor,and often glosses over the complications of living with an autie.

So if anyone would like to subscribe,and therefore receive notification when a video is upoaded.the link to this project is.....



Many thanks,and moderators please feel free to move this,if it is not the appropriate place

just got the error message concerning urls,and I completely understand,I believe clicking my www link will take you straight there anyway

Being an Aspie rather than LFA I can't as easily speak for your son, but I know that if my NT twin brother were to make a daily video diary of me I'd surely give him a good punch to the face.

Are you sure your autistic son is ok with this diary?

Yeah, I'd also add a note of caution. It's important to distinguish between making a video about what it's like to have a member of the family who is autistic, and what it's like to be autistic. The two are very different experiences, and there is the potential for a conflict of agendas. For instance, it may be very frustrating for you to live with certain behaviours, but it may also be very frustrating for him not to be able to communicate to you, even though he may be trying to. Which would you emphasize in your presentation?

I'm sure you're already aware of these issues, but it's important to acknowledge that a lot of adults with ASCs across the spectrum are concerned about the agenda that parents/families pursue in relation to the condition... maybe you could do some research into that to know what the arguments are, then you'd know what pitfalls to avoid.

But I think SDFarsight has an excellent point - consent is crucial. He's your son, so legally you have the right to consent to this happening. But your son is the subject of the video - if you had a way to communicate with him, you'd probably seek his opinion first. And as SDFarsight says, if it was me being asked, I'd probably say no, at least unless I was sure my own perspective was going to be a major part of it.

There's a slogan we often use... "nothing about us, without us!" Might be good to start from that point.

nobody could be 100% sure hes ok with it,as he is pretty much in his world constantly and unable to verbalise- and in my opinion,and that of every professional connected with him- in no way able to comprehend the issues.
So even if I were to say...yes hes ok with or no hes not,there will always be some dissenters who would argue.

We have however discussed this at length,and for betetr or for worse,thought this was a very important way of highlighting the far reaching consequences of a spectrum disorder which can cause such a severe disability, and can harshly inpact on the future of all concerned. Siblings,parents grandparents,and most of all Jake, all of our lives are radically affected by however many faulty genes turn out to be at fault.

But I take your point,and can assure you that the angle of my sons vlog,is "his life" if you like,his living with Jake and his Autism,not in any way Jake living with his own Autism..

Hope this clears up any confusion

I just watched the two episodes that are on youtube.

Just to explain that I have Asperger myself, my father too, my brother AS/ADHD, and my mother has autistic traits. I spent many years working with severely autistic adults at an NHS residential unit. I would often work 50 hour weeks because of staff shortages (in between my own breakdowns). That's nothing like the 24/7 job you have, and I had no personal relationship with the people I was working with, but it is some small insight. I'm familiar with the keys and the public nakedness and the communication issues.

Of course there are big differences between our experiences. Living at home with someone who needs constant supervision and is at constant risk of danger is not something a lot of people could ever really empathize with. I appreciate Aaron's perspective as far I can from my own experience, and also the effect that Jake's condition must have on all of your lives.

From what you've said here, I'm sensing a feeling that other families also have, that information output (maybe from within the autism community?) is dominated by a certain agenda, and that the substantial difficulties of severely low-functioning autistic people are therefore ignored.

Of course, Aaron will post his perspectives, and he's very much entitled to. I'd disagree with the language he uses to describe his brother, but it's his choice of words, and it's a free world. The reason so many of us are fighting to create a positive perspective of ourselves is that we are all of us getting discriminated against and sidelined in society on the basis of being deemed worthless. Many of us are also concerned about the effects of genetic testing and eugenics... difficult as my life has been, I would hate the idea that I would have been aborted and never had the chance to experience life.

Many presumed medium-, or presumed low-functioning autistic people have the same concerns, as they express them here, or at other internet sites, such as "Autistics" (dot org). Many autistic people who are limited in verbal communication can be highly competent at expressing themselves via keyboard. This may not be true of Jake according to what you said. However, their experiences of childhood, of being put through various therapies which they hated, of being around family members who were frustrated at them, are very harrowing to read. We all want to be accepted as we are, and we want society to change to allow us to participate in it, not to reject us, or to research toward our genocide.

Honesty from everyone is important. It would only be right to warn you that a lot of people here might get very upset about what Aaron says or the way he interacts with Jake, because a lot of us have been on the receiving end of negative opinions from family members. I'm not upset myself, because brothers are brothers, and me and my brother very rarely acted with each other in a "politically correct" manner, nor would we be expected to be. Aaron is only doing and saying what comes naturally, and it's an interesting insight for me, because it teaches me a lot about why family relationships are the way they are.

Each of us speaks for ourselves. Not one of us can speak for all of us. It's a great shame that the community as a whole feels forced to have to prove our value and our right to exist to a wider world, but that's the reality... and there's a lot of different opinions about how to do that.

In essence, the need of autistic people to claim our place in society often clashes with the desire of parents or families to express their frustration at having to look after us, or their desire to find a cure, or to have the option of abortion. I believe families need far more support than they get at present, and one of the things we're looking at in the resource centre we're developing (as a group of ASC individuals) is how to provide support to families, not just for ourselves. But it's a very tricky tight-rope to walk on. It's one of the most difficult things we've encountered so far. It seems very hard to bring families and individuals with ASC onto the same page.

Anyway, sorry for that long one. I guess it's just something I've thought about a lot lately.

please don't apologise,

In the past I have also read some damn harrowing experiences from Autistic s who were treated dreadfully by even family members.
All I can say is,perhaps the language used isn't "politically correct" but the heart of it is true love.Aaron absolutely adores Jake,as we all do.....but we are ever mindful that we will not live forever,and unless greater understanding and recognition,of the truly low functioning end of the spectrum is achieved,Jakes future will be even more insecure. If myself and immediate family were to be killed in a car crash,Jake would be institutionalised immediately for the rest of his life,likely sedated and his quality of life would be appalling. I know this to be a fact,as the media pushes the higher functioning autistics,and the "jakes" are a forgotten minority. The provision is almost zero,unless you can pay,and the sums needed are huge.
This is why Aaron feels very strongly that its important to show all aspects of living with a severely disabled young man,which Jake is, if Aaron were to "script" how he feels and use unfamiliar,yet PC language,I think a certain amount of the truth would be lost. The fact he is speaking as a 16 year old would and does,gives an honesty,even if it is uncomfortable.

And yes,the "jake" end of the spectrum is very under represented,because unless we family members step up,there is no way they can speak for themselves.

I think perhaps its best,that from this site I remove all links,I would not want to upset anyone.


Thanks for the input

The media does "push" higher functioning autistic people these days, but I promise you as a fellow UK resident, an aspie, and the carer of another aspie with more severe executive function problems than myself, that we get virtually no help ourselves. I'm pretty much crushed under the weight of the daily grind of surviving, because I'm "intelligent" and I'm left on my own to cope. Which I can't. I nearly lost the plot today when a bill arrived, and have been stressing and in total anxiety ever since.

We don't fall under mental health, because AS isn't a mental health problem, and we don't fall under learning disability, because our IQs are over 70. I had a breakdown earlier in the year, but I no longer have access to a psychiatrist on the NHS, despite their suspicion that my depression is actually bi-polar disorder. Nothing's been done about that.

Appalling service provision is the reality for all autistic people in this country. Hopefully the Autism Act that went through Parliament this year will start to change that. I appreciate that you feel forgotten about, and it must be terrible for all of you, especially Jake, but I can tell you very sincerely, I feel the same way. My problems may be different, and in most ways, less substantial than Jake's. But it's the same prejudice and ignorance that stops me getting help, as stops Jake. The only place this isn't true is in education, where I do now get support and help. But from health and social services.... zero. And there are individuals on my college course who don't see why I should get help when they don't. They don't see me pacing around in quiet corridors or wanting to headbutt the wall after being in a classroom for an hour. There's no way I could go to college unless I was supported.

We're never all going to sing from the same song sheet, and I guess there's no reason we should. But I think it's important for all people who have a connection to autism, either as individuals with the condition, or as family members, to fight for positive change in terms of better acceptance of us, and improved support for us and our carers. Sometimes that means being clear about the downsides, but for a lot of us, who are fighting misconceptions and prejudice in our lives, it means being clear about the positives also. It means getting people to value us as part of society, and to understand that with the right support, we can achieve a lot more.

Anyway, I hope things improve for Jake and for you, and that support will be more forthcoming for all of us in the future. And I'm sure that Aaron does love Jake, as you all do. It's just that a lot of us know what a "burden" we are to others, and I guess it's hard to deal with how people react to that. I'll give the example of my own mother, who is very sweet, and tries her best. But when I see her worrying about me, or getting frustrated with me, I just can't bear to be around her. I just want to die. I'm not the son she needs me to be as she grows older, and I'm very aware of it. Family life is very hard when autism is involved, for all concerned.