Young people with HF Autism to participate in an awareness film clip

Hi recombinantsocks, 

Yes, you're right they are definitely not mutually exclusive- and I quite like the idea of being a 'film maker'! I have to admit I have no editing skills, but I'm sure I could learn.

And I am glad you saw my apology, we certainly didn't want to upset anyone with our ideas so I felt it was important to apologise if we caused any upset.

Also, I was trying to keep an open mind. Like you said, a person who has Aspergers might not "really understand how an NT reader will take a comment" and people who do not have Aspergers sometimes have the same problem trying to understand the intentions of an individual with Aspergers. So even though I felt upset, I knew I should keep an open mind and be reflective. 

As you say, Longman might have meant to be harsh (it's not for me to say or judge) but whichever is the case, I will still listen to everything he has to say because I think he has made some very valid points and I will be taking everything he said on board. 

You say "If you're dealing with ASD kids (or adults like us) then you need to be learn how to be extra extra careful not to offend." And I think that's a very good point. That's something I am aware of. We want to try and teach NT students about Autism so that they learn about the way a person who has Autism might 'think'. We hope this will help NT students to be more sensitive and more careful about the way they speak to others (especially their friends who have an ASC/ASD).

We believe one of the best ways we can change attitudes is by interacting and learning.

I think your idea of 'wait, listen and think twice' is excellent advice for everybody, including NTs.

Thank you again for your encouragement and for helping us to learn more.Your words educate us and are very vauable to us. Getting feedback on here will help us develop a better awareness workshop for sure.

Hi recombinantsocks 

Just taking my lunch break, so I thought I'd write a quick reply.

You're not being pedantic at all... What I meant to say is that we are not film makers (I am a qualified Art Psychotherapist and Catherine is a Behaviour Analyst). However, we are employing a film maker to shoot and edit a short educational video clip about Autism.

The video clip will be used to educate students in mainstream primary schools about Autism.

We hope that by involving and consulting with parents and children who have Autism, we will ensure that their voices are heard, their views take priority and that they are represented in the way they wish to be represented.

Longman has made a some very useful comments and we will of course be ensuring that all our work is properly regulated- we are in the very early stages of setting up the social enterprise, so we still have lots to do and learn.

It was really nice to read your message. 

We look forward to demonstrating that we are genuine and that our project is designed to raise awareness of Autism in a lawful and sensitive manner.

Have a great weekend 

Abi and Catherine 

Hi Longman,

We have not obtained moderator permission to invite families to take part in our filming day.

When we read the community rules we didn't consider ourselves as wanting to promote "research studies, surveys or media work", so we disregarded that section.

However, after your feedback I looked at it again and realised that if you click on the 'reserach and participation' link in that section, it takes you to another page with more in-depth infomation mentioning 'Authors, journalists and film makers'.

Whilst we are not film makers, (*Edit* we are the co-founders of a social enterprise) we are certainly hoping to make a film- (*Edit* with the help of a professional film maker) so until we can get NAS moderator approval, I have removed our original invitation and information.

Whilst we are disappointed, I'm glad you raised this, as we don't want to break any rules or upset anyone. Also the points you have raised are perfectly valid.

However, it is not true that we purposefully posted this on a friday evening in order to avoid moderation. I had no idea this is when posts are moderated. That comment hurt my feelings and I am concerned that we have come across as devious and unconvincing. 

We posted on a Friday evening because we've been at work all day (we are developing this social enterprise in our free time.) We are young, enthusiastic, well-intentioned and doing the best we can with limited resources.

If you have any, it would be nice to hear some positive questions about our Autism Awarness workshops or some acknowledgement of the positive steps we are trying to take, to balance out the negativie assumptions. 

We hope this provides some reassurance.

Hope you have a nice weekend

Abi and Catherine

This is an interesting thread ... it would be good to know (clearly and succinctly) what 'approval' abi and catherine finally did obtain to fulfil legal obligations, child protection/vulnerable adults laws etc, before filming.

I also agree that permission from the NAS should have been sought BEFORE posting, which I would have thought abi and catherine would have known, on a moral level and also having worked with young people and vulnerable children, regardless of their age? I'm an adult with AS, and was personally very surprised/concerned to see this post had been made, without permission.

Unfortunately, once someone has posted in this way, regardless of how innocent it might be, and it slips through the net ... the intent/message has been put out there in an invasive way, and a Forum such as this then becomes an unpredictable, potentially stressful environment .... not good for someone with Autism/AS.

Oh ... and I don't give you permission to use my comments in your workshops or in any other way. A SE of this type is a good idea - but there are possibly a number of schemes available to ensure you are running your SE legally and efficiently; perhaps this is something to consider?

If the filmmakers intentions are as presented, then their educational efforts are laudable; NT ignorace and intolerance causes a great deal of distress to many on the spectrum.

It was, however, naive to think that it was appropriate to advertise for child participation on this forum without agreement from site administration.

For future reference it seems most appropriate that film-making dealing with the sensitive issues surrounding autism should be conducted with the support and oversight of a reputable regional or national Autism society.

Contact details:

The National Autistic Society
393 City Road
London, EC1V 1NG
United Kingdom

• Tel: +44 (0)20 7833 2299
• Fax: +44 (0)20 7833 9666
• Email: nas@nas.org.uk

Hello mumof4boys772,

Thank you for your message. I am so sorry that we have taken this long to reply! I must have missed the email telling me that you wrote us a message.

I'm sorry to hear that you've had such a struggle with the paediatrician that you've seen. I really hope you and your son are now getting the support you should be getting. I know there are some brilliant areas on the NAS website for information and advice. If you haven't already, perhaps you could try calling their helpline so that you can speak to someone who can give you support and guidance?

It's really great to hear that you think Autism Awareness is a positive idea for mainstream school students. We really hope we can make a positive difference to the lives of young people on the spectrum.

Our video shoot went really well- we had a a really great mix of children, parents, young people and adults (and luckily the weather was good!)

We have not completed the editing of the video because we still need to orgainse another day of filming to complete the film clip.

As soon as we have completed it we plan to pilot our workshops at Primary schools in London. We will also be putting together a short video clip about our awareness workshops (that will on our website)

We will let you know as soon as the video clip is online so that you can take a look at it.

Best Wishes,

Abi and Catherine

I would like to see the clip if you have it online,i also think its good what your doing as i dont think mainstream are always aware properly,my son is in mainstream i belive he has hfs and sensory,the head teacher belives hes on the spectrum however due too the incomptence of one peadatrician it looks like we are getting nowehere oh and lack of communication with school.

Hi KaloJaro,

Thank you for taking the time to give us feedback.

Yes, we mentioned the social enterprise. It basicaly means that we want to operate as a social enterprise (Social enterprises are businesses that trade to tackle social problems, improve communities, people’s life chances, or the environment. )

Our experience is varied and stretches across more than a decade, however I believe that there is always more to learn and we can always make improvements by listening to feedback and respecting other people's opinions.

Catherine has been working for years with families whose children have Autism and we have both worked in a school specifically for students with Autism, where we recieved extensive training- I learnt a lot during my time there. I have worked at different projects with adults who have Autism and also worked as a nanny for a young boy with Autism.

We have recently been to a training specifically on Aspergers and we learnt a lot during the recent Autism Show in London. However, we plan to continue with our learning and will always want to gain further experience.

Catherine has a lot of formal training and I have specialist experience related to my Masters and Art Psychtherapy training.

I will stop there because this isn't an interview

Yes, we certainly understand that seemingly placating or harmless posts can be percieved with suspicion and experienced as threatening and agressive. So we welcome your feedback and we will do everything we can to learn from it.

We have a friend who has Aspergers and he is interested in getting involved in the project, so we will be getting advice from him to guide us.

We will work as hard as we can to learn as much as we can during this project. Also, we should point out that we are not setting up a service to work exclusively with individuals on the spectrum- our main objective is to educate NT students.

To clarify- our filming is just one part of our project. It is going to involve an adult with Aspergers who is happy to take part (and has a lot of experience in public speaking about Autism) and also some NT children. There may or may not be any children with Autism (this depends on whether they and their parents wish to be involved.) 

Like the previous feedback from recombinantsocks and longman, Your feedback has been extremely valuable to us and we are really grateful.

We agree with you 100% that whilst 'Autism is just one part of an individual's personality', it is also a very important part and that important 'differences' do exist. We agree with you that everybody should accept these differences.

In order to 'accept' people need to be 'aware' and we hope that our work will encourage this.

We do not want to make anyone feel uncomfortable and we are grateful that you have highlighted this.

Finally, we agree that all the concerns raised are valid.

We are continously learning and will always be keen to make positive changes to our ideas and plans as a result of feedback.

I hope you enjoy the rest of your weekend.

Abi 

Hi, you mention your Social Enterprise a lot, but do not explain it, care to briefly outline what it is? Also, how much research and/or experience have you had with interacting with those on the autistic spectrum, as already proven by prior posts, what you feel can placate and is harmless can in fact be percieved with suspicion and at times even aggressive behaviour should invididuals feel that they are being threatened?

People on the high end of the spectrum may appear composed in public, but for the most part any damage done is usually not seen by anyone save for close friends or family, so unless you're able to identify when someone on the spectrum is feeling uncomfortable or be unable to reassure them in a straightforward manner, then perhaps this venture isn't best pursued without a proffessional used to interacting with members of the autistic spectrum of the specified age range (as many are trained to deal with specifically younger individuals with a diagnosis, not their teenage counterparts).

It is all well and good to promote awareness of autism, and to try and portray it as being only a part of a person (which it is), but unless you can accept the difficulties that comes with the condition (because like it or not, in a public social situation, it is a disability) it will be impossible to make those on the spectrum comfortable enough to 'show' their real personalities.

I say all of this without any venom.

The problem is that there seems to be a valid concern that what you're trying to do will contradict itself through the manner in which you go about it.

You can be film makers AND psychotherists AND behavoural analyst! 

I saw your apology earlier in the thread and wanted to thank you for that. I think longman may not have meant to be harsh with his comments but sometime we aspies don't always work out the best words or really understand how an NT reader will take a comment. (longman, if you did mean to be really harsh then that's another thing!?). If you're dealing with ASD kids (or adults like us) then you need to be learn how to be extra extra careful not to offend. i have the idea to wait, listen, think twice before speaking. I don't always manage it so i still get into arguments sometimes. Sometimes i don't manage to give people the benefit of the doubt and i go with the first thing i think of and then it all kicks off!

This will be our last post for today as we are planning our film shoot and we are pretty tight on time! :)

We aren't students, we are young (is 30 still young?) ;) experienced and qualified professionals.

We are neither thoughtless nor irresponsible- that's uneccesarily harsh.

Anybody who gets involved with our Autism Awareness initiative will have clear and transparent information about our aims, objectives and Social Enterprise.

Enjoy your Saturday,

Abi and Catherine

The legal situation around minors and also around vulnerable adults is horrendous, and often seems counter-productive where the context is to help young people.

One of the consequences is the creation of committees to monitor activities involving children and vulnerable adults, on which i've served.

But I've also come across this with the complexities surrounding student projects - you'd be amazed how many student projects by supposedly "streetwise" students involve interviewing or even fiilming kids hanging around the streets in order to study social interconnectivity, youth culture, the reasons underlying behaviours, or the geographies of young people.

Now you might think that such studies would help understand a lot of related issues, but it has to be done properly, and it is not uncommon for students to quickly find themselves in trouble with the law. A lot has to be done to stop students going off on such ventures without the proper infrastructures and clearances.

The OPs are in a not dissimilar situation I guess, young by their own admission, enthusiastic and well-meaning. But they really have to stop and think about the implications of posting on a national website for kids to film.

Parents might well consent thinking this is an autism organisation and trusting that it would be done properly.

But you have to stop and think - people with unlawful intentions to film kids could pose on this website as an autism organisation. That's why it needs to be properly set up, registered and vetted. Also the request for kids to film would not be permitted in this fashion.

Well intentioned maybe, but thoughtless and irresponsible

Hi Longman,

Thanks for your concern.

You're right- The law is very important and exists to protect and safeguard us all. We actively seek to work in accordance to all relevant legal frameworks.

Luckily we have experience of working in schools and with a variety of vulnerable client groups

Our discussions with parents prior to filming will ensure all bases are adequetly covered. It will be the choice of individual parents and their children as to whether they wish to be involved in our project- nobody has to be involved if they don't want to be.

I hope you can find some space in your thoughts to consider why someone might be interested in making a video about Autism? I would suggest that it might be because they want to raise awareness of Autism and not necessarily because they want to upset lots of people by breaking the law.

Thank you for your advice- your feedback has been very useful to us.

Abi and Catherine  

AWA said:

Whilst we are not film makers, we are cetrainly hoping to make a film

that's the sort of reasoning that baffles the heck out of me. Am i being pedantic? ;-)

Well done longman for persuading them to do things properly, their post may well be well intentioned and genuine but it wasn't obviously so.

i also raised the question with the moderators through the Feedback to NAS link so you weren't alone in your unease.

At the end of the day we don't want to put insurmountable barriers in front of people who genuinely want to help people with ASD. the law is there to protect vulnerable people but not to prevent assistance. The balance needs to be right and the processes, which longman seems to know better than most, have to be followed.

i hope that the OPs can show that they are genuine and that the project can help some more young people to overcome their problems.

Thank you for modifying the original posting. 

There are important issues with regard to filming minors, and particularly minors where there is additional vulnerability.

Yes kids parties are often filmed but in the control of parents and approval of other parents.

But filming by an independent agency is a different matter. It isn't just about the parents consenting to their children taking part, there is a difficulty that parents cannot readily ensure how the film material is subsequently used. What happens to the out-takes after editing? What prevents them falling into the wrong hands?

Normally filming in an educational context the people organising the filming must be OFSTED Registered. There are procedures and safeguards and this is a very complex legal area.

I would advise that you look into the legal issues.

Hi longman,

I Hope you're well

Yes, our short film clip to promote awareness of Autism in mainstream schools will involve children aged 6-16, some of whom have high functioning Autism. We can't think of anybody better placed to express views and give feedback on the subject than the young people and children themselves.

The day of filming will also be a vital part of our service development because we want our workshops to be informed by the ideas and feedback generated via the children and young people that participate in the film shoot.

Just because an individual has Autism or is a child, does not mean that their voice should go unheard. We plan to take proactive steps to ensure that children with Autism have an opportunity to be involved in all aspects of our service development, including the film clip that will feature in our awareness workshops.  

Every child that volunteers to participate will have the support and consent of their parents/ legal guardians and can be involved as much or as little as they wish.

We have no set script and we are really looking forward to hearing what parents and children have to say. The main objective we have set ourselves is to create a short film clip that clearly conveys the aims and objectives of 'Achieving With Autism' and also promotes the idea that Autism is just 'one part' of an individual's personality.

As far as legalities are concerned, we are warmly inviting children to take part in this initiative, but only with their parent's signed consent and approval. 

We will be working sensitively and mindfully in a public space with a professional team and facilitating what we hope will be an informal and fun afternoon.

Fingers crossed for good weather!

Please feel free to ask any further questions

Catherine and Abi 

Could I also ask then, since you are willing to explain things clearly, whether you obtained permission from the NAS moderators to post this request?

Also, could I ask, please, the reason for posting after 6pm on a Friday night, when it is less likely that the Moderators would be on hand to intercept? If you are genuine wouldn't it be more appropriate to post during a weekday within normal working hours? Asking to film children and posting the request at the start of a weekend, seems to me, if you'll forgive my suspicious narure, not in keeping with the assurances you gave.

I ask because this discussion forum is intended as a safe place. Part of that safety involves the moderators vetting such requests. Perhaps you have obtained permission, but usually there would be something on the posting to show us NAS has approved. The procedure is explained in the rules and guidelines.

However many assurances you make, and however emotive the way you state your case, people on here need to feel that the Moderators are ensuring that properly vetted people make such requests.

You are asking to film 6-16 year olds. You may well say that you will involve the parents, but I do feel you need to be more convincing. This is a very important issue.

goodness they want 6 to 16 year olds to appear in a film............... I do hope this is legal...just because they say it is for autism doesn't mean it is right. People should not be posting requests to film children withiout a great deal more corroboration.