Looking back to the past, when I was a child and teenager there was very little awareness of autism among people, including among professionals. By about 2000 awareness among professionals working within education and social care was increasing and by the time The Autism Act 2009 arrived it was quite common among educational and social care professionals and perhaps medical professionals working with children to be more aware of autism. Autism and Asperger’s were also becoming terms parents would hear more and so parents seemed to increase in asking professionals whether they think their child might be autistic or have Asperger’s.
I think there are a number of reasons for the increased awareness at this time. I think the main reasons were all of the controversy around whether the MMR vaccination causes autism, and I think the increased use of social media and the internet in general meant that people could search for information more readily and find the terms autism and Asperger’s and then connect with others who had autistic children.
It was common to work with parents who were frustrated that they believed that their child was autistic but professionals didn’t take them seriously and they couldn’t get autism assessments for their children. In 2009 I held a group where parents had a say about what services and support they wish was available in the area. The main response was that there was no support to get an autism diagnosis for your child or teenager and that there were no support services available to help. There were some charities who would offer some support, but only to those with a diagnosis. Also that there was very little information available about autism. It was common for me to work with parents and when I would ask how they would like things to be, they would say things like that they want their child to listen more. I would ask how they would know if their child listened more and they would say that the child would be looking at them when they talk to them.
These children would be autistic and so I would think that it was normal for them not to be looking at or making eye contact with the parents, so I would ask what they know about autism given their child has an autism diagnosis, and they would say that they don’t know anything. They didn’t know that lack of eye contact is common among autistic people. Usually once they knew this they wouldn’t focus on lack of eye contact as being a problem and we would look into what other signs there would be that their child is listening.
Since around the time of The Autism Act 2009 there seems to have been an increase in funding around autism support and more going into supporting adults with autism, although her in West Sussex we lost one of the best autism support services in our area in 2010 due to government cuts to the local authority which lead to a reduction in funding from the local authority to the charity. Another similar company took its place, but the benefits of The Autism Act 2009 and getting additional funding into the county was really initially just adding some funding back in where it had been recently cut.
What was different was having more of a plan, having an expectation that there would be an autism lead for the county, that there should be staff training offered to staff who work with autistic individuals and that GP’s and those who assess the care needs of individuals should have specialist autism training, and that there should be a clear pathway to diagnosis for children and adults and post diagnosis support.
My opinion is that if all of this was followed it was kept very quiet. I worked for West Sussex County Council and for Arun District Council between 2007 and 2015 within social care roles often dealing with autism as part of my role whether it was supporting families to seek diagnosis for someone in the family, or supporting families to find support following a diagnosis. I regularly attended multi-agency meetings to discuss families and their needs, I worked closely with social workers for the families and with health professionals from psychiatrists to health visitors and educational professionals. I was involved in multi-agency meetings to identify what services are available to children and families with the idea of us creating a catalogue of support services.
In all of that time I never knew who the autism lead was or of meetings taking place regularly to look at The Autism Strategy for the area and despite trying to be actively involved in any meetings to do with developing and improving support for families in my area I never found any way of being involved in these meetings, either as a professional or as an individual living in the county.
Looking forward how would I like to see things progress?
I think that it is great that there is more autism awareness now generally and that there is an autism strategy, but I still think there is a long way to go. Here are just a few ideas for what I would like to see over the next ten years.
- Compulsory Staff Training
One of the things I would like to see is that it is made compulsory for all companies which employ staff to have staff training around autism and mental health awareness and this training should be compulsory for all those in the company, it shouldn’t be just for staff and not management. Manager’s of all companies should be required to take training about managing autistic staff and supporting staff with mental health issues and how they can get the best out of those staff (training should also be provided in relation to other areas like ADHD, Dyslexia, etc). This training should cover areas like signs and symptoms, and strengths and challenges.
- Autism and Mental Health Awareness In Schools
Schools should teach students age appropriately about autism and mental health issues. Autism awareness should be taught in schools from primary school (and likely with teaching about other relevant areas like dyslexia etc) helping children to learn and understand how others process the world etc. Then from the start of secondary school also teaching about mental health issues. I have had many teens say to me that from talking with me they realise they are depressed or having panic attacks or anxiety etc and that until they were talking with me they worried something was wrong with them. Many have said they don’t know where to find support, what to do to help themselves etc.
- Autism And Mental Health Awareness Programme Accessible Through Schools For Parents
I know of some schools where they do offer talks about autism and mental health, it would be great if this was something made compulsory that schools had to offer including guidance on what parents can do and where parents can access support. It could be that much of this could be done with webinars or videos on the school website, or perhaps a video series could be made maybe in conjunction with The National Autistic Society and Mind that all schools could link to and promote to parents that can have children and teens talking about their experiences as well as professionals and adults who are autistic or who have or have had mental health issues sharing experiences about what is helpful and what a parent can do to support their child/teen.
- Businesses Being Autism-Friendly
Almost everywhere I go I find reason’s why I struggle in those places and I wish that changes were made to make them autism-friendly. Businesses can have set times and days when they will have their lights on lower and any music on quieter and reduce the amount of stimulation on those in the business premises.
Businesses can teach staff about interacting with autistic customers. For example, I get annoyed if I go out for a meal and staff keep coming over to ask if everything is okay, but also get annoyed when I can’t get attention to pay. What I would like is maybe lights on a table that I can turn on to say I want someone to come to the table so that I can give a clear message.
Businesses can also look at making sure processes are clear about what to do in those premises, It can be confusing when you don’t have clear guidance. Also not to create confusion, for example, I get confused when ordering food in fast food outlets where I have mentally rehearsed my order, I even rehearse it in the order I know they always want the information and yet as soon as I have said what I want in detail they reply ‘do you want to go large?’ despite me saying I wanted regular, they then say ‘do you want any of this with that?’ despite me already stating what I wanted, then they will say ‘and what did you want after this?’ and I will have forgotten because I had already said my full order, and now I can’t remember what I said, I just need them to have entered what I said as I was saying it, not asking me follow up questions trying to up-sell etc, I just end up getting angry and likely to walk away.
What would you like to see over the next 10 years?
I also have some autism books I have written about my experiences as an autistic person, my professional experience and knowledge and tips and strategies for autistic people, their friends, family, employers, teachers, etc – ‘Look Into My Eyes’ autobiography, ‘Asperger’s Syndrome: Tips & Strategies’ and ‘An Autistic Perspective: Death, Dying & Loss’. If you are interested, you can find out more about them here.