Part 1 – Listening to our autistic community
In Part 1, we asked our autistic respondents to tell us about their own experiences, and we asked family, friends and carers to tell us about the experiences of the autistic people they support.
We asked a mix of closed questions (ones with a list of answers to pick from) and open questions (ones which let people write in their own answers).
In total, answers to the open questions amounted to 195 pages of text. We analysed this text to pick out recurring themes in people’s answers, and then we counted the total number of comments relating to each theme. This let us see which issues are causing the greatest concern for our autistic community.
The 10 most prominent issues were:
Part 2 – Listening to everyone
Part 2 of the consultation was open to everyone who wanted to be involved in the conversation about improving support for autistic people in the Isle of Man.
We asked what people see as the biggest barriers to accessing autism support in the Isle of Man. All groups identified long waiting lists as one of the biggest hurdles. Our autistic community also identified a lack of professional expertise, lack of public understanding, and a lack of funding as major issues. Professionals told us difficulties with staffing or staff retention were a significant barrier.
We asked what people would like us to prioritise in the first National Autism Strategy. The top 3 priorities for the autistic community are training for professionals, early diagnosis, and more support for families. Professionals also said they would like to see more support for families, and added early intervention and the employment of autism specialists as priorities.
Finally, we asked everyone what would make the Isle of Man more autism friendly. The overwhelming majority of people said that more public education is needed to increase awareness, acceptance, understanding and inclusion.
Next Steps
We are grateful to everyone who took the time to tell us how we can improve support for our autistic community in the Isle of Man. The information you gave us will be used to shape our National Autism Strategy, and will help us make sure we improve the things that matter to you most.
The National Autism Strategy will be published by December 2022.
Between 29 April and 10 June 2022, we ran a public consultation to ask our Island’s autistic community what they need us to include in our first National Autism Strategy. We wanted to find out about any current gaps in services or support, and what the community’s priorities for improvement are. We asked a range of questions about autistic people’s experiences, needs, and values, to give us a better understanding of how we can help our autistic community to flourish.
In total, 392 people responded to our consultation. Of these:
The consultation was split into two parts. In Part 1, we wanted to hear about what life is like for autistic people in the Isle of Man – this part of the consultation was only for autistic people and their family, friends and carers. In Part 2, we asked everyone (including professionals and other interested parties) what they thought would improve support for our Island’s autistic community.
You can see the full breakdown of results in our Autism Consultation Report.
The Department of Health and Social Care (DHSC) is writing a National Autism Strategy. This strategy will help us to improve the way we support our autistic population and their families, by making sure services are provided fairly, effectively, and where they will do the most good.
Please note: We are interested in all Autism Spectrum Conditions (ASC), including Asperger’s Syndrome. We use the words ‘autism’ and ‘autistic’ to mean anyone with any ASC, including Asperger’s – this is done to make the questions easier to read. We understand that not everyone on the spectrum feels the same or has the same needs, and we have no intention of stigmatising or overlooking any part of the community.
We are asking these questions because we want to hear about the experiences, needs and values of autistic people of all ages (adults and children), so that we can better understand how to support you across the course of your life. If you are on the autism spectrum (or think you may be but haven’t been diagnosed), we want to hear from you. We also want to hear from carers, family and friends of autistic people.
By answering these questions, you will help us understand more about the needs of our autistic population, and how those needs can best be met. It is important that you tell us what you need and value most, so that we can write a National Autism Strategy that works.
You can respond online on the Isle of Man Government Consultation Hub, by email to DHSCEngagement@gov.im, or in writing to:
Amy Monroe,
Department of Health and Social Care,
First Floor, Belgravia House,
Circular Road,
Douglas,
IM1 1AE.
Telephone Number: 01624 685816.
If you would prefer to answer these questions in person, we will be holding drop-in sessions at the places listed below, where you will be able to get a paper copy of the questions and go through them with someone face-to-face.
You can book a specific time-slot at any of these drop-in sessions by visiting the Eventbrite booking system. We will do our best to accommodate any special requirements – please contact DHSCEngagement@gov.im for more information.
The deadline for responses is 00.00 Friday 10 June 2022.
Thank you for taking the time to complete this survey. Your responses will help us to understand how we can create a truly autism friendly island.
We will combine all of the responses we get so that we can build a picture of what matters most to our autistic community as a whole. We will use this information as a guide while we write our National Autism Strategy, so that we can make sure it produces the biggest improvements for the greatest number of people possible.
We will publish the results of this consultation as a ‘You Said, We Did’ report no later than 29 August 2022.
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