In the 2014 ‘Think Autism’ Autism Strategy document there are 15 priority challenges for action. I thought what would be interesting is to go through all 15 priorities and see what my responses or experiences would be to them.
An equal part of my local community
1. I want to be accepted as who I am within my local community. I want people and organisations in my community to have opportunities to raise their awareness and acceptance of autism.
My experience has been that some businesses do things around autism, like having an autism hour where they have dimmed lights and quiet environment etc, but they don’t keep it up. I generally feel accepted when I say that I am autistic. I have had some experiences of people not accepting me, but this is rare. With organisations I’ve had more problems. I have found them to often be inflexible and not listen. I have had some good experiences. For example, last year I went to a book launch event at Foyles in London. Derren Brown was talking about his street photography book ‘Meet The People With Love’.
I am not good at travelling to places and across London and on underground trains or attending events on my own. I also find crowds challenging. A friend came with me to support me getting to the venue and back again and also supported me in the venue, including talking to the staff at Foyles about me being autistic and struggling with crowds etc. As you can probably imagine there were a lot of people seeing Derren Brown. I made sure that myself and my friend arrived early, so we ended up sat near the front while Derren spoke, but this meant that when Derren was going to meet and sign books the way everyone was queuing meant that I was near the back of the queue. My friend spoke with Foyles staff about me being autistic. The staff spoke with Derren and Derren agreed to have me skip the queue to meet him and get my book signed and get a photograph with him. This was incredibly kind of Derren and of the staff at Foyles and very kind of the others queuing not having a problem with me skipping the queue.
2. I want my views and aspirations to be taken into account when decisions are
made in my local area. I want to know whether my local area is doing as well as others.
I am aware of the autism strategy and regular meetings which should take place. Despite spending the last few years trying to be involved in raising autism awareness and help progress things in my area I’ve so far been unable to gain any traction. I have no idea whether West Sussex is doing as well as or better than other areas. I rarely hear about things going on, I never seem to find out about many things. I have spoken at a few autism parenting groups, but only recently come across information relating to autistic adults. I would love to be involved in holding talks and workshops locally about autism, but have failed so far over the last 4 years to have any success linking up with any charities, the local authority or other organisations. So I don’t feel my views and aspirations are taken into account when decisions are made and doubt the area is doing as well as other areas.
3. I want to know how to connect with other people. I want to be able to find local autism peer groups, family groups and low level support.
I agree, I want to know how to connect with other people. I have recently found out about a possible peer group, but I haven’t checked it out, it doesn’t seem to be local enough to me given that I don’t drive and there seems to only be the one group and I don’t know whether it would be what I would be looking for. For me, it isn’t so much about finding a peer group, but more trying to find a way to link in with what my interests are. I would love a local hypnosis practice group or something around my interests to link in with that I can actually get to and that is frequent and suitable for me to attend, somewhere I feel comfortable attending.
4. I want the everyday services that I come into contact with to know how to make reasonable adjustments to include me and accept me as I am. I want the staff who work in them to be aware and accepting of autism.
I do want this, I don’t feel that many places I come in contact with know how to make reasonable adjustments. I want staff in all businesses to receive training around autism awareness and workplaces to have strategies in place for how autistic people can be accepted and supported.
5. I want to be safe in my community and free from the risk of discrimination, hate crime and abuse.
I personally haven’t faced much discrimination or abuse within the community. I get abuse frequently on YouTube on my videos because of being autistic and in workplaces I have faced discrimination.
6. I want to be seen as me and for my gender, sexual orientation and race to be taken into account.
I generally feel that people see me as me.
The right support at the right time during my lifetime
7. I want a timely diagnosis from a trained professional. I want relevant information and support throughout the diagnostic process.
It took me almost a year to go from seeing the GP to having my assessment where I was told I was autistic and then I just had to wait for the report to be written up and posted to me. I didn’t get support through the process other than receiving the forms in the post and told to complete them before the assessment. I did this and attended the assessment. I didn’t have any other guidance or support.
8. I want autism to be included in local strategic needs assessments so that person centred local health, care and support services, based on good information about local needs, is available for people with autism.
I want this. I am unaware whether this is now the case or not. I do think there is more awareness around autism now especially among healthcare and social care professionals who work on the frontline.
9. I want staff in health and social care services to understand that I have autism and how this affects me.
I want this. I don’t come into contact too often with health and social care staff, but when I do I want to know I can tell them I am autistic and have them listen and engage in a conversation about how this affects me. I don’t know if it shows on my medical records or anywhere else at the point of a professional taking a look at my details.
10. I want to know that my family can get help and support when they need it.
I am unsure whether there is any support for family, like my wife. Generally she is very supportive and goes places with me to support me. The other one is that I often pay double for things to take someone with me to things and I don’t know if there are services which can help here? I know that Chichester Festival Theatre now have a support service where you can meet someone at the Theatre who will support you getting the ticket, getting to the seat, getting snacks etc. So this is helpful and when I go to the Theatre I may look in to using this service as a cheaper option that paying someone to go with me. In the past I have paid for someone to go with me, for example, to Derren Brown’s book launch, to see Ian McKellen and Patrick Stewart in theatre. I had to give a talk at Comic-Con in London and had someone come with me to this, I taught hypnotherapy in Poland and had my wife go with me to support me in attending this, so I always have to pay for a second ticket and cover someone else’s travel for many things I attend and I have turned down attending things where I have been unable to figure out someone to go with me, like turning down teaching hypnotherapy in Las Vegas and talking about autism at a Neurology conference in Germany.
I am aware of carers support, but I don’t think my wife would think of herself as a carer, but there are times my behaviour can likely be frustrating and she might find it helpful to have someone to talk to, or have others to interact with to get an idea of the experiences of others in similar situations. Abbie often says she forgets I’m autistic, because to her I am just Dan.
11. I want services and commissioners to understand how my autism affects me differently through my life. I want to be supported through big life changes such as transition from school, getting older or when a person close to me dies.
In my book ‘An Autistic Perspective: Death, Dying and Loss’ I cover life transitions because these involve loss. I explain about transitioning from one school to another, or from home to independent living, or from school to work, or when people die etc., and explain about how this impacts on autistic individuals. This is something I think, especially here in the UK where there is focus on local authority services only meeting their statutory requirements and not delivering services which could prevent problems or support people at an earlier stage. The focus is on charities and other organisations having to find a way to offer this support.
I definitely don’t believe that any service would pick up if something happened between my wife and I and I became homeless. I doubt anyone would notice. I now think that because I have a diagnosis, if I walked out of a job because of changes they were making, or lost a job, I would likely be able to say I am autistic and I like to think that I would be able to access support to help me find work quicker. I think something beyond the scope of this, but it is important is that employers and educational establishments etc need to be aware of how autism affects people throughout their life. The way I chose to write my autobiography ‘Look Into My Eyes’ was to address this. I wrote it so that the reader can have an idea of how being autistic impacts on the autistic person at different life stages and in different situations and the behaviours autistic people may display and why, to try to help non-autistic people understand what they observe and what they can do to help the autistic person.
I know that my default setting when things happen is to shut down and shut myself away. It isn’t to seek help and support, or to tell people what I am experiencing. I worry that many autistic people are similar to this and this makes them slip through the cracks. If I became single I wouldn’t choose to interact with people, I wouldn’t go out of my way to tell people. When I walked out of my holiday camp job years ago I was single, I didn’t tell anyone I quit, I didn’t go and try to claim benefits, I didn’t try to find a way to eat or to find money to pay rent, I didn’t try to find another job. If it wasn’t for my manager at the time deciding to come to my flat day after day until I responded to him I would have stayed in the flat, then got kicked out of the flat, then moved into the woods. I wouldn’t have contacted family or friends or sought any help. There must be other young autistic people who would be similar, and the people I am more concerned about are those who are undiagnosed, because they won’t be able to access relevant support. When I was unemployed after being ran over I didn’t have a diagnosis and I couldn’t officially access the support available for those with disabilities etc.
I don’t feel that autistic people and their families are aware enough or have access to those making decisions. I would like to see public meetings where autistic people and their families are invited to talk about what autism services are available in the area and to have a say on what is needed and what improvements are needed. Not just perhaps a single autistic representative attending a meeting, or worse, meetings of professionals taking place to make decisions without consulting autistic people and their families.
12. I want people to recognise my autism and adapt the support they give me if I have additional needs such as a mental health problem, a learning disability or if I sometimes communicate through behaviours which others may find challenging.
This was the main reason for ending up depressed and suicidal in my last job, that I was being very open about myself, but unfortunately didn’t have an official autism diagnosis at the time, so was ignored and didn’t have my additional needs or way of processing the world recognised and wasn’t supported. I struggled with sensory overload, with changes to my routine, with lack of clarity in how I was communicated with, with anxiety and depression. This was well after The Autism Act 2009 came about, so to me I don’t feel this has been met well.
Since being diagnosed people I have interacted with have accepted me more, but I still get a lot of times where even when I say that I am autistic, people will say things like ‘that is just something people say as an excuse for unacceptable behaviour’ or that they don’t believe me, because I don’t ‘look autistic’, or when I say about struggles I have or am having they say ‘but everyone feels that’ and they dismiss my lived experience. I don’t know if things would be better in work if I worked now, but I like to think they would be because I would be able to get occupational health support in to help me and my employers would have a legal obligation to make necessary reasonable adjustments.
13. If I break the law, I want the criminal justice system to think about autism and to know how to work well with other services.
Fortunately I have never broken the law. I have interacted professionally with the criminal justice system and I have interacted with the police a number of times, sometimes positively, other times not so positively. Many of my recent interactions with the police have been positive, but back when I used to work in children’s homes I had a night where I called the police due to us staff being at risk of serious harm. When the police arrived I answered the door and the police officer grabbed me by the neck and forced me into a room pinning me to a wall and about to be violent towards me when I took the keys out of my pocket and said ‘do you want me to show you up to the office?’ and he then let go of me and came to the office with me. I thought to myself that I was glad it was me who answered the door and not one of the teenagers who he obviously thought I was one of because I wouldn’t have wanted him to treat them like that and they would have retaliated and probably given him an excuse and justification for further violence. I’ve supported autistic people in their interactions with the police as appropriate adult just making sure everything is taking place fairly and at least with me there as a professional things seem to have gone fine.
Prior to The Autism Act when I was working in children’s homes there was an autistic young teen who received a phone call from his mother, calls weren’t monitored, we tried to allow the call to be as private as possible for those who received calls, his mother never told us what she was going to tell him, she then told him his grandmother had died and then she hung up on him. He got angry and smashed a door then ran away to try to get to his grandmother’s. We dealt with the incident and obviously had to report it to the social worker and call the police to help find the teen. The social worker and police pushed for him to be put in a secure unit for his behaviour despite myself and all other staff saying we could understand this one outburst and he shouldn’t be put in a secure unit. We were ignored and he was put with young offenders in a secure unit where he was very vulnerable. We tried to fight to get him out of their, but were ignored and over the weeks we were still involved visiting him and fighting to get him back into the non-secure children’s home rather than where he was which looked like a prison we could see he was increasingly being bullied and deteriorating.
Developing my skills and independence and working to the best of my ability
14. I want the same opportunities as everyone else to enhance my skills, to be empowered by services and to be as independent as possible.
One of the things I have most wanted over the years has been to get a degree. When an opportunity arose to take a degree a few years ago I jumped at the chance. I started the degree, I had told the university that I was autistic, but things didn’t work out. I struggled with things (not the content of the course) and couldn’t seem to get things resolved and ended up quitting the degree vowing that I would never try to do a degree again and would likely never do any kind of further education again. I now will not take any academic course. I won’t put myself in that position again.
I used to take courses regularly and attend courses regularly (like day or weekend courses about therapy or coaching), but I don’t now. In my last job I ended up hating having to attend courses and clinical supervisions. In previous jobs attending courses has been my favourite part of the job, because I love learning, but I would attend therapy training courses and it would be a day or two of why I think wrong for the job and why I shouldn’t do the job because I think about things differently, and the same in clinical supervisions. I would attend group clinical supervisions and the supervisor would say things like ‘I’ll ask you all and then come to Dan because he is obviously going to have a different opinion’ and this wasn’t said in a positive way. Then when I didn’t say much one session he said ‘I want to know what you all feel about one of you not speaking today?’ I knew he was talking about me and so went to say I can answer that and say why I haven’t said much and I was told ‘no, you had your chance to speak, I don’t want to hear from you now’. Other staff (all of us managers of teams of family support workers and supporting social-care level families ourselves) found supervisions so uncomfortable and complain to their managers about the way I was treated in the sessions, but these weren’t rare occurrences and not just with that supervisor.
So I rarely feel empowered. I find it best to keep away from people, which is why as soon as I was able to afford to do so after losing my job I stopped seeing clients, and then as soon as I could afford to do so I stopped teaching live courses and if I could afford to do so I would stop interacting with people online. For years I have had people above me tell me I think about things wrong to be a therapist, despite client’s giving me positive feedback and colleagues and staff of mine and students giving me positive feedback. I have only ever had one manager be positive about my abilities as a therapist/coach.
15. I want support to get a job and support from my employer to help me keep it.
I am currently self-employed. I don’t really know what I want. I know I don’t like being self-employed, but there is no job available which suits me and no support I’ve ever found to help me find a path or role which meets my needs and is what I would like to do for a living. I struggled in employment and was made redundant from my last job following workplace discrimination, constantly feeling anxious, depressed and suicidal, and I don’t know of other jobs I could do, let-a-lone afford to do. I also doubt employers abilities to support me in keeping the job and in best utilising my skills and abilities, and I have never been able to find any autism charities etc helpful, they seem to spend time focusing on what they can do for themselves and raising money to continue, but don’t seem to promote or support autistic individuals who ask for support etc, so I just try to spend most of my time keeping myself to myself and hope that maybe one day one of my books will be popular enough that I don’t have to teach eCourses or do YouTube or interact on Facebook and Twitter, and can instead just spend my days going for walks in the woods or beach and write books for a living perhaps releasing a book a year. But I know this is very unlikely…
So, my experiences going through the priority challenges haven’t been very positive. There are glimmers of positivity, but a lot of uncertainty and a lot of randomness where you have to be lucky to have had a good manager, or positive experience. As I have often mentioned, there is improved awareness of autism now, what is needed next is to create improved understanding and support for autistic people. Hopefully over the next ten years that will happen.