Self Advocacy Booklet

[ScienceGeek]

For the last couple of years myself and Trekster have been part of a group that has been working on a self advocacy booklet with the NAS. We've had a lot of consultation meetings and have been working hard on getting the wording just right. We felt that it was better if there was a wider consultation as there was only 7 of us and we couldn't possibly speak for the needs of all on the spectrum. This has led to the self advocacy booklet being put on the NAS site for further input, the funding is only for england right now but may possibly be rolled out across the UK subject to further funding. That being said it doesn't stop people from other countries giving input! The booklet can be obtained from this page we would really appreciate the feedback, the deadline is Friday 19th November. Please forward this if you know of anyone who could also give feedback/benefit from this. Thanks.

[Mumble]

Sciencegeek/Trekster - please accept this reply as it is intended: constructive criticism in order to address particular issues.

 

I read this booklet on the NAS website before you posted this thread. I suppose in some ways (and I really hope this comes across as I hear it in my head ) I was really surprised to read that you had been working on it or indeed that anyone on the spectrum had had much involvement in its creation, particularly in the wording.

 

I guess there's a lot of issues I had, but I'll stick to a few keys points which you may be able to answer:

 

1. I'm not sure who (other than people with an ASD) this is aimed at; it felt like it tried to address the whole spectrum and as such actually misses everyone. It felt patronising to me, especially in the language and some of the 'about me' parts (and in some aspects here disabling because there's an expectation of difficulty and it's asking you to find them - possibly a case of seek and ye shall find?). At the same time, some of it, I suspect, would feel overwhelming to others.

 

2. Linked to being overwhelming, I think the length and the unnecessary pages/information are a major issue. It's unlikely that an individual is going to be going to a meeting to address all of those issues in depth in one go (if there was a meeting addressing all these it would be about identifying them and deciding on priorities, not on working on each in depth). However, with all of the pages there, there's a sense of having to fill something in (maybe having a problem that isn't there?) or of it being overwhelming in terms of length (we all know how off-putting the length of the DLA form is). I wonder if it would be better either to:

• have a series of booklets, each dealing with one issue - they could all have the same intro bit, or
  
• have one more generic booklet - many of the pages have exactly the same format and prompts/questions anyway, just different titles/pictures, so a generic booklet where the issue is filled in at the front may be more helpful
  

3. I felt the 'what is Autism' section was far too long (21 pages before you get to the advocacy part! ) for that purpose - many meetings are going to be time-limited and it is not going to be a good use of anyone's time to spend a large amount having to read all of that. I think it would be better to have a one-page (or even half page) basic guide - maybe something like the info on the Autism alert cards the NAS do and maybe a short space for any issues pertinent to that meeting - i.e. 'please give me time to process your question rather than rephrasing' - may be more beneficial.

 

4. There are lots of issues with dodgy pagination (titles on one page, text it refers to on next, etc.), spelling/incorrect words and grammar - these may seem small issues, but if talking to professionals, image is important and I, personally, do not feel that this booklet portrays a professional (nor user-friendly) image.

 

 

I hope that you will read these points in the spirit I have intended - they are my opinion. If I were to design something like this, I would be tempted to keep it far simpler (and possibly have different formats, i.e. one with visuals (or preferably written using a programme that produces PECS) for those that need it and a text only version for those that don't. I might also be tempted to format it differently depending upon how a support worker is being used - whether they are writing it, helping the ASD individual write it or speaking for the individual.

 

It's difficult because I can't include a diagram here, but I would have it as one A4 sheet (landscape). On the LHS I'd have the title with space to indicate the meeting theme - i.e. benefits, befriending, evening activities, etc. Under this, I'd have something like a copy of the Autism alert card. Under this, I'd have space for briefly highlighting issues, i.e. processing time, role of support worker in meeting etc. and at the bottom of that side, envisaged outcomes/aims of the meeting. On the RHS I would then have space to write notes possibly using something similar to the titles you already have. This single sided page could then easily be photocopied and distributed to everyone attending the meeting, everyone would get a brief understanding of ASD which is all they'll have time for then, you will all be working to the same goals, and the points raised can act as a sort of meeting agenda.

 

Just so you know, I'm not just making this up with no basis, it's a format I use regularly particularly with hospital or welfare meetings and I've found it to be really useful. I hope that something here is of help to you.

[Tally]

I have filled in the survey and posted it off. I actually filled the entire empty side of A4 on the back of the survey as well because I had so much to say

 

The most serious flaw in my opinion is that it is not clear what the booklet is supposed to be used for. The detail is excessive for asking for support in a one-off meeting. No one is ever going to read the entire booklet in preparation for a meeting with me. However, there are parts that could be very useful for me to work through by myself if I were making a big decision like applying to university and wanted help to identify my support needs. But in that scenario the information about ASD is not useful as I already know it, and could find it in another leaflet if I did not.

 

I am not sure that "differences" is the right word to use when seeking support. If you are trying to explain your support needs and ask people to make adjustments for you, then you really need to admit that what you have are "difficulties."

[ScienceGeek]

I think the main thing is that the booklet is meant to cover a whole range of situations and sometimes only a few parts will be appropriate to show. It isn't meant to be read from front to back for one meeting. The other thing is that any pages that you feel are irrelevant can be removed as most sections are on separate pages, they are aware of the formatting issue which should be sorted before it is released the hard copies we have seen have all the formatting correctly done. I'm glad that you have taken the time to leave feedback though as constructive criticism is what was sought, and I'm glad that we pushed for a wider consultation.

[Eccentric]

I generally agree with the views expressed by Mumbles. It's not clear what sort of people this booklet is aimed at, and there is far more information than someone arranging a meeting is likely to need. By all means include a comprehensive range of information, including some of the less usual characteristics, but a better introduction would be a page or two giving a general overview of what autism is and how it affects people.

 

It should also be made clearer that no autistic displays ALL the things listed, and that autistic behaviour can be quite subtle - when you meet the person they may seem no different from anyone else. I've often found that - especially when meeting people trying to help me get work - they can't understand why I have difficulty getting work because I am obviously intelligent and articulate.