Input to the Westminster Commission on Autism

WRITTEN SUBMISSIONS ARE NOW CLOSED BUT YOU CAN INPUT VIA OUR SURVEY!

https://www.surveymonkey.co.uk/r/WestminsterAutismCommmissionSM

The Westminster Commission on Autism is conducting an inquiry into access to quality healthcare for people on the autism spectrum and we need your input.  This report will make recommendations to the Government to improve healthcare for people with autism.  Please tell us what would help you and your family!

  • Are you on the autism spectrum?
  • Are you a health professional?
  • Are you a parent/carer for someone on the autism spectrum?
  • Do you represent a charity or third sector organisation who work with people on the autism spectrum?
  • Are you a professional in the field of autism?
  • Are you an academic in the field of autism?

If so, PLEASE send a written submission to the Westminster Commission on Autism.  We need to hear from those who have stories, opinions, suggestions and ideas to help improve access to healthcare for people on the autism spectrum.  If you are a parent/carer for someone who would be unable to contribute to the commission using the Easy Read form, please advocate appropriately for them in your submission.  You must be a citizen of the United Kingdom make a submission.

Please use this form to help structure your submission.

There is an Easy Read version available here.

Alternatively, there are a limited number of 20 minute telephone appointments available. Please phone 0300 800 8801 if you would prefer to contribute to the inquiry in this way.

The closing date for submissions is Monday 2nd May 2016.

If you would like to know more information about the commission please see the following:

The Westminster Commission on Autism needs YOU!

New Westminster Autism Group

Universal Healthcare? What if you have autism?

Why a Commission? & other FAQs

 

 

5 thoughts on “Input to the Westminster Commission on Autism

  1. GP’s and health care professionals need better training on awareness of difficulties of those on the spectrum and communicating effectively with those with an ASD. My story is that my daughter at the age of 26 was given, in my view, inappropriate advice and treatment on contraception because they did not understand how to communicate effectively with a person with an ASD.. My daughter felt that she had been railroaded into having a hormone implant because she was disabled, without due explanation of the risks of such an intervention. After having the implant put in , 1-2 days later, my daughter felt so depressed she was having suicidal thoughts. Only the presence of her then boyfriend who was neurotypical prevented something serious happening. Being reasonably intelligent, my daughter , when the feeling had subsided , looked on the Internet and discovered that severe depression following such procedures can happen. As my daughter already suffered on and off from severe anxiety and depression at times, she felt this was not good. She talked to me about her experience while she was staying with me one time some months after this incident.

    My daughter felt that she wanted the implant removed but would not go back to the same GP as she felt they would not do it. I arranged for her to be seen by our local sexual health clinic and told them in advance that my daughter had an ASD. The people at the clinic could not have been more understanding. The nurse there told my daughter that she had a son with an ASD, so she knew where my daughter was coming from, and she told my daughter exactly what the risks and after effects of having the device removed would be, in such a way that my daughter understood.

    My daughter subsequently had the implant removed at that clinic by the doctor there who also was very understanding, who explained the procedure realistically. After she had had it removed my daughter felt a whole lot better. Also as one who struggled with her weight , the implant had increased her appetite , which she was not told about, and she put on about 2 stone, which she is still struggling to take off. In my view , the original GP did not inform her fully enough or in such a way that she could understand, given her sensory and communication difficulties on going somewhere like the doctor’s surgery. Nor did the doctor allow for the fact that my daughter had had enough intelligence and gumption up until then to use condoms responsibly to ensure she did not get pregnant or a sexually transmitted disease. Thus she was clearly capable of making a rational choice re contraception.

    People with an ASD, are not unintelligent necessarily, but often have sensory difficulties that interfere with their ability to understand information given and communicate what they want to in such a social interaction, like at the doctors. They are also quite vulnerable in that they can be persuaded easily by someone in authority to do something which a) they don’t really want to do, or b) not necessarily in their best interests, as happened here. Health professionals need to frquently check the understanding and the informed consent of such individuals as well, as they may appear to have taken information in , but not necessarily have done so in reality. More training for doctors and health professionals on ASDs and communication with individuals with an ASD is most definitely needed!

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  2. Hello, one of my services is a transition service for people 16 to 25. In the service we have a severely autistic child who recently went to a health check up and was very anxious, as the nurse was completing the check up, the young person jumped up and stated this is inappropriate touching. I fully understand his thought pattern, as he has been taught this in class, however the transition of skill from class to GP service is missing, which was not taken into account via his social story. To support this person in future, we will need a fully detailed social story, taking into account his compartmental view of the world, association of individual to their work, the role of the person and what they will do, quite possibly a picture of the health worker and the GP service. The main issue will be his sensory integration issues, with the impact of touch from a health professional, which may cause distress. So before the appointment we will need to introduce a sensory modulation approach to allow the health worker to complete the assessment.

    Kind regards

    David Smalley

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