Autism Matters
  • Home
  • Training
    • Exploring Autism
    • Exploring Being Autistic
  • Blog
  • About
    • Caroline's published articles
  • Services
    • Training and CPD
    • Talks
    • Consultations >
      • Consultation enquiry
      • Consultation confirmation/payment
      • Family consultation confirmation/payment
    • Exploring Being Autistic
    • Employers
  • Resources
  • Contact
  • Feedback

What do we do with effective support?

21/5/2014

9 Comments

 
If you give someone glasses and they can see better, do you take away the glasses when the person can see better?*   Very few people would answer “Yes” to this, yet the equivalent to this happens to autistic children and adults.  Children given support at school whose behaviour and achievement starts to improve can find that the support is removed because now they are doing well and not deemed to need it.

I recently got an email from Ian, a great support worker who had persuaded his client, Gilbert, to come and see me for autism consultations after hearing me speak.  He wrote: “I have gone a couple of times with Gilbert to the weekly folk club in the town.  Gilbert sings and plays guitar and he has said he really enjoyed it and liked the atmosphere and was able to sing at the open mike.  He said she would go on his own but he hasn’t been since; something is holding him back - Gilbert says it himself.  Are you able to explore with him if there is anything that he could do to help him get out of his door and go. ”

I find this an interesting question because actually the answer is right there in the question; what helped Gilbert get out the door and go was having someone go with him.  
My take on this is that Gilbert avoids social situations because he has a disability (autism) that incapacitates him in such situations.  Given that Gilbert is autistic, and autism has at its core an information processing difference that results in social situations being particularly treacherous, it’s perfectly understandable that he would avoid them.  It seems to me encouraging that having Ian accompany him provides enough support to enable Gilbert to enjoy an event that was previously inaccessible.  This looks to me to be a good solution to the problem of Gilbert being prevented by his disability from engaging in community activities.

If there are not enough support hours for this to be viable, it might be worth seeing if there is a befriending service that could help.   While I think it might be possible given time for Gilbert to feel comfortable going alone to the folk club, expecting this to happen after just two accompanied visits is creating a situation that could well re-enforce rather than counteract feelings of failure.  In this case  there is a caring support worker who, despite having an understanding of autism, didn’t quite get the depth of the social difference and resulting difficulties.  

In Saturdays Guardian there was advice which I felt made a similar inappropriate “you can do it” assumption: http://www.theguardian.com/money/2014/may/17/dear-jeremy-work-advice .  There was an enquiry from someone who wanted help to decide what to do after a change in the nature of their job. They were doing fine providing customer support by email, phone and letter, but were struggling badly since the job morphed into a face-to-face situation “I felt I was forced into taking a role a long way outside my skill set.  I now wake up dreading the day ahead…….”.  The advice seemed to be essentially to get over yourself.  The ‘agony uncle’ responds “It’s only when you’re in the same room as a client that you throw a wobbly and I believe it’s within you to learn to screen this out…be grateful for being forced by this accidental restructuring into doing a job you’d never have applied for.”

To me this reply shows a lamentable ignorance about potential neurological and mental health issues  If someone said they had a job delivering papers on a flat round, but the route changed to a steep hilly one and now they were in constant pain, I doubt anyone would say “be glad you have this challenge”.  Mental distress is as real and disabling as physical distress and needs to be taken as seriously. It seems a shame that there could be such a lack of awareness amongst professional advisors of the possibility of disability that the advice they give could be toxic to an autistic individual.

*I love analogies, and irritate my children by constantly using them – however this one I have borrowed from a a speaker at a conference on autism diagnosis organised by Dr Laura Crane.

9 Comments
peter applebey
27/5/2014 08:36:03 am

Absolutely! Ongoing support is vital, and I think any really concerned person trying to help anyone with autism would take this on board. People who say 'a challenge is good for you' are taking a principle that is reasonable for one world (like dieting or physical exercise for example)and applying it to another. Like saying to a fish "you're good at breathing underwater so now we're going to put you on dry land - enjoy the challenge".

Reply
Caroline Hearst
28/5/2014 08:22:44 am

Thanks for that excellent analogy Peter - I think what is challenging for many professionals is understanding the extent of the different functioning in autism and responding accordingly. In fairness I think in most cases there is no appropriate informatin in their training.

Reply
Sadie
1/6/2014 10:21:45 pm

I have some preliminary thoughts about the two people whose examples you quoted. It seems from what you say about Gilbert that support for autism is in much the same needy state as it is for mental health issues - where , if you are lucky, you get some support when you are in a fix, counselling perhaps, but it is time limited and ends, currently I think it is about twelve sessions, and then it is over.

One of the issues I feel with the autistic spectrum is that it is difficult to find someone who understands how difficult one finds mundane, everyday things. There are many things that I understand with my intelligence, which I employ, but I still find the doing of the everyday thing very difficult, an example would be buying something routine over the counter in a shop. It does not occur to people that one could be having difficulty, and I, at least, have always found it impossible to explain my difficulty, and I can say it is your work, and the work of others in the field, which has at least given me understanding of my previously mysterious, frightening difficulties relating to autism.

I wish there were more befriending services and support workers, and that they understood autism, especially invisible autism, and considered it regarding their clients.

As for the newspaper article! Well, I suppose Jeremy is only an agony uncle, but my hackles are up!! The lady who wrote may well be on the autistic spectrum, but it is not on the advisors agenda at all.It should be!!

I identify part of my life completely with the lady as it happens. When I left school in 1967, I tood a job with the Department of Social Security (now the DWP). I was a Clerical Assistant, and I sent out all the forms and got the claims ready for sickness benefit and other claims. The telephone only rang when someone wanted to be sent a form, and one took their name and address and posted it off to them. I loved this job, I was meticulous at the clerical work and did a good job.

So I got promoted - oh dear - just like the lady who wrote that letter, I still had clerical work and enjoyed that, but I hated the telephone because people were frequently upset, and it rang nearly all the time. I found it incredibly difficult because, yes I knew what I had to say, but found it excrutiatingly difficult to say it, added to that it was the kind of language people don't understand - involving ' contribution years' and ' benefit years', and I never knew what it say after that. To add to that I frequently had to go down to the public counter and intervew someone face to face. I dreaded every single day. I could not understand my difficulties in speaking, which also meant I could not negotiate my way out of the job. Eventually, I got engaged and my fiance helped me out and I left.

I left in 1978, needlessto say autism ' barely existed' then, but has the situation changed? What would happen to a woman in my position now? I have had bags of counselling, and of all the many counsellors, some of whom have been helpful, but not one mentioned invisible autism, even the recent ones. Yet I find what I consider to be my autism, rather than mental health issues, plays a very significant part in all the difficulties I have in my life. I do still have some mental health issues, and I continue to work with those, but autism is a completely different kettle of fish. I get very annoyed when people give you some kind of CBT type response, the " you can do it" you mentioned. I do use these positive reinforcement approaches and they help a bit, but they don't take away the central core of the difficulty, which is deep within the make up of my brain somewhere, and it is not responsive at all to the " you can do it".

Reply
Caroline Hearst
1/6/2014 10:24:19 pm

Thanks for taking the time to comment and share your expereicnes Sadie - hopefully this will contribute to ending the lack of awareness and understanding that your experiences demonstrate. Great that you have found some tools that help you deal with the challenges your autism poses.

Reply
Peter Munday
7/6/2014 02:03:08 am

Caroline, I think you make very good points here.

However, I think there is another factor to consider. Depending on the degree of autism a person has, with a bit of initial encouragement and support, they may be able to take on a new challenge. However of course many autistic people could not, and for them on-going support would be vital. The problem is that on-going support may be costly in terms of money if paid for, or in terms of time and effort if provided by volunteers.

Like you, I am concerned by statements like “you ought to be able to …”. Although I have only mild autism myself and often have been able to do things I initially thought I could not, there have been some occasions when “you ought to be able to do X” statements have caused me considerable feelings of guilt, particularly when I was younger and I really could not do the particular X. Now I understand much more, I can resist such “ought” statements more easily.

Yes, I agree, greater awareness of autism is very important.

Reply
Tony Sandy link
29/10/2014 01:23:01 am

Speaking as someone who is high functioning but on the creative level, it is extremely difficult to get and hold a job unless it is very mundane and even then it is difficult to keep it (longest job was 4 years and even then it was over three different locations). My creative solutions have in the main been ignored because while I can create ideas I cannot market them as I speak gobbledy-gook in pressurized social situations and go to pieces in interviews.

Reply
Jam Accessories link
20/5/2023 02:54:28 pm

Nice blog postt

Reply
autism help adults link
13/11/2024 02:13:16 pm

Thank you for this insightful post! Autism help adults is often overlooked, but it’s crucial for promoting independence and well-being. Resources, therapies, and community support can make a significant difference in daily life and personal growth. With more focus on autism support services tailored to adults, we can foster environments where individuals thrive and feel understood. Keep raising awareness—it's essential!

Reply
homes for disabled adults link
23/2/2025 02:41:17 pm

Great post! Providing homes for disabled adults that prioritize accessibility, independence, and community support is essential. More inclusive housing options can improve quality of life and dignity. Let's advocate for more accessible, affordable, and supportive living spaces! #InclusionMatters

Reply



Leave a Reply.

    Categories

    All
    Communication
    Diagnosis
    Disability
    Empathy
    Employment
    Language
    Masking
    Neurodiversity
    Non Verbal Communication
    Non-verbal Communication
    Sensory Issues
    Socialising
    Stigma
    Support
    Theory Of Mind
    Therapy
    Women

    Get Updates

    Blog posts in alphabetical order of titles


    Autism -  ordinary or extraordinary?
    
    
    Autistic people can be social


    Autistic women, do we even exist?

    Autism and social skills

    Difference, disability or Gucci diagnosis?

    Context or content?

    Does language affect our attitudes to autism?

    Everybody has an autism spectrum condition

    Is everyone a bit autistic?

    Mild autism?

    Sensory Issues

    The A Word, drama with explicit autism

    To mask, or not to mask, that is the question.

    The S word (stigma)

    What do we do with effective support?

    What you want always wanted to know about autism but were afraid to ask

    Who are the autism experts?

    Who decides if I'm autistic?

    Who or what is TOM and what does he or it have to do with autism?

    Why quicker diagnosis of autism is useful now, but hopefully won’t be needed in future


    Other blogs

    Autism age. Incisive blog by Cos Michael who specailises in autism and aging.

    RSS Feed

    Archives

    December 2020
    August 2020
    January 2020
    December 2019
    September 2018
    August 2018
    April 2018
    May 2017
    April 2017
    February 2017
    January 2017
    November 2016
    May 2016
    April 2016
    March 2016
    February 2016
    September 2015
    May 2015
    January 2015
    October 2014
    July 2014
    May 2014
    April 2014
    January 2014
    October 2013
    September 2013
    July 2013

get updates
Picture