I am writing to you in response to your request for feedback on your proposed Autism for Wales Bill. I should firstly state that I am an autistic adult individual and what many people would consider a highly successful individual, being a director and part owner of a very successful Welsh business.
I was diagnosed in 2009 after, I feel, a significant failing by the NHS to diagnose me during 2007/2008. Since diagnosis I have had very little support other than what I have recently gained privately. This lack of support has lead to a number of relationship breakdowns, repeated misunderstandings in my personal and work life, and apparently a long history (but also in recent years) of moderate to severe depression and persistent suicidal thoughts.
It just goes to show that success and happiness are not synonymous and that even autistic individuals who are "lucky" enough to go largely unnoticed in society really may not be coping as well as they are perceived. For this reason I would really like to do what I can to help others like myself or to better still prevent them falling into the same trap as me.
I can't really comment on current effectiveness. I was failed by the NHS in this areas many years ago and have not since had the courage to attempt to re-engage - what I can do is highlight the significant impact that not getting this right can have on an individual's life
Absolutely, I feel that without this public awareness and particularly awareness for professionals assisting and diagnosing people with autism, and adequate methods for them to deal with it, will simply not be developed.
I agree that the bill should focus on creating an adequate strategy, that putting too much content regarding how it should take place and the definition of autism will simply limit individuals getting the support they need as has happened so often in the past.
They should be required to consult with those who support autistic individuals but most importantly autistic individuals themselves - absolutely nothing should be decided without consulting us!!
Yes - once it is developed it should be reviewed ideally annually or at least every other year. It should only be updated as necessary per the review.
Ask autistic people, their families and people who support them - with particular emphasis on autistic people, this is the only way to be certain that you are meeting their needs.
I can't give recent experience but when I sought diagnosis in 2007/2008 the GP that I saw (it's not easy to see the same doctor at my surgery) did not take me seriously, if I recall in fact he gave a surprised chuckle when I asked about it (I don't feel he was malicious, simply lacked awareness) and I insisted that he refer me on. He did so and I eventually saw a locally based Occupational Therapist who didn't have a clue what Asperger's Syndrome was and so diagnosed me with stress - I agreed with her on this but equally pointed out that diagnosing the symptom does not resolve the underlying issues. She would take it no further and so I simply exited the system from that point onward for a diagnosis and any further future support that I may need. I eventually had to travel to Surrey 18 months later and having spent this time saving up so that I could finally receive a diagnosis through private means.
In a nutshell, based on my personal experience and ignoring the length of time since my diagnosis I feel it is extremely difficult to get a diagnosis and support. I recognise that it may be easier now and that it may be easier for individuals who have more severe symptoms of autism.
Awareness and education are the two single biggest factors that must be addressed. General public awareness is important but this will come in time, the key target should be professionals assisting autistic people, including those who may have a hand in diagnosis.
Absolutely - unless this is taken serious through the entire chain then it will not be successful and autistic people will continue to be failed.
As already mentioned I cannot really comment on current provision of services. Certainly if there are sufficient services currently available I am not aware of them so awareness spreading schemes are definitely not efficient. If I need support I do not know where to go to get publicly available help, only the means to seek this privately - I would also still likely not go to my local surgery for assistance due to previous experiences. Based on this I would say that they are insufficient.
Yes, absolutely - without this guidance this will be implemented in an inconsistent and potentially haphazard way, likely negatively impacting individuals.
Yes I absolutely agree with all of these areas.
I strongly believe that autistic individuals should not be treated as though there is something wrong with them and that they need to fixed, simply due to them being autistic. Whist I understand that the needs of autistic individuals varies to to it being a spectrum disorder and that some individuals have further learning and mental disorders, but if the public were to change its view (a big ask, I know) and make it easier for these individuals (and other individuals with other disorders) to be treated as another type of normal then they would much more easily be able to fit in to society and not be or feel like a burden or that they are different. How this would be achieved I have no idea other than generally raising awareness and encouraging society to be positive, understanding, caring and helpful.
Yes - without this it will be difficult to truly understand the breadth of autism and the success (or not) of any initiatives. This information should be used appropriately and individuals' data MUST be kept extremely confidential and only used according to the consent that they or their guardians provide.
Some sort of census that assures anonymity - I know that I myself have been very guarded over the years because of my reticence due to fears of how I may be treated; for instance since my poor experience with my diagnosis there is no NHS medical record of my diagnosis therefore I would not appear with any statistic that does not receive input directly from myself.
No.
Anyone that may need to support someone that does have or could have autism needs training - this could be teachers, teaching assistance, head teachers, GP's, nurses, psychologists, therapists etc. Anybody who may need to identify that someone needs further assistance or diagnosis MUST have this training or else individuals will (continue to) be failed. There should be at the very least a base level of training across all of these people, and further training for those who must work directly with/support autistic individuals.
Don't try to force employers to employ autistic people - this will not be successful as employers and their employees will resent it and autistic people will end up being put into roles that they should not be in which will be destructive to them. Do educate employers on autism and the many strengths of autistic individuals, encourage them to see that the skills that they can offer and help to reduce their fear of the "cost" of supporting these individuals - they need to focus on the benefits (which can be immense!); this is the absolute key! Most people are not the "normal" that people perceive as being normal, the real normal is that everyone has different aspects that they struggle with and other aspects where they excel - putting in place measures to assist autistic people will also help other individuals to be the best that they can be and give the most that they can give, so this will help employers beyond just their (potential) autistic employees.
It may be best to not state at all and simply leave this down to the medical profession, otherwise I believe it is better to state this in the strategy as enshrining into legislation could make this inflexible, as you state.
My biggest concern would be how employers may perceive any changes that they feel are thrust upon them and which they are not equipped to manage, whether putting in to practice or financially, or maybe both. This may be minimal or it may be significant depending on the eventual legislation (and this includes not just private organisation but public ones that are really struggling under the current government). I address this in question p).
Yes, it's clear that the provision of additional services, training, research, reviews, monitoring and auditing will increase the cost of public bodies in implementing this legislation. I am not sure how this would be accepted in the current climate, my fear is that it would not happen. All I can offer is that if autistic people are better supported and welcomed in to public life and employment they can at least make some positive contribution to society which could save cost or possibly even make monumental positive impacts on society which could simply enrich society (financially and developmentally).
I don't feel I am able to answer this.
Current financial cost of supporting autistic people, current negative social impact of not supporting autistic people adequately, future cost of the new legislation, future saving of the future legislation and future social positive impact of supporting autistic people.
Clearly you have to be recording the current cost of supporting individuals; I would suggest that it is also important to keep in mind that there are likely a large number of individuals who have not been correctly diagnosed and how are therefore receiving support that is not getting attributed to the support of autistic individuals. Finally there is then the cost to society of those individuals who are not receiving any support, and this may be through other benefits or the harder to calculate impacts such as homelessness and suicide. I don't know how but there must be some way to estimate and assess this impact. We must then calculate how much of this can be saved through positively impacting people's lives to reduce (significantly, I hope) these negative impacts through hopefully lower cost support. If at least it is cost neutral and improving people's lives then we have won!
I just want to say I wish you all the best in your endeavour and thank you on behalf of all autistic people for doing what you (and I) feel what is right to support us and correct the current failings of our Government and society.