Derbyshire Autism Partnership Board meeting, May 2017

**Please note all views in this blog post and website are my own and are in no way affiliated or represent the Derbyshire Autism Partnership Board.**

I attended my first ever Autism Partnership Board (APB) meeting for Derbyshire and I have to say (quite ashamedly) how much it has opened my eyes to the scope of the work and the challenges faced by people working towards parity for those of us on the Spectrum.

Autism Partnership Boards (APBs) were established in each county around England and Wales after the Autism Act 2009 laid the grounds for legislation that outlined the statutory duties of each region to provide for individuals on the Autistic Spectrum. Since this original piece of work there have been a number of updates that have refined exactly what the duties and responsibilities are that must be met regionally.

Jennifer Stothard, an Autism Project Manager for Commissioning and Performance in Derbyshire kindly invited me to this meeting to see if it was something that I might like to become involved in more regularly.

The meeting was attended by a whole host of individuals from across Derbyshire, including representatives from Derbyshire Healthcare Foundation Trust, Derbyshire County Council and the Department for Work and Pensions, and Derbyshire Autism Services. As well as myself, Craig Kennady, another individual living with autism who is also Co-Chair, was present, creating a really strong cross section of expertise within which to share information. Legislation outlines that the APBs much “bring together different organisations, services and stakeholders locally and sets a clear direction for improved services”. Derbyshire has certainly created a strong working group against this first requirement, and the benefits of this became apparent immediately.

The topics covered were frankly vast, and this is where my own insight developed. It is always very easy for a person’s world-view to consist of their own experiences and mine have always been focussed on:

  • issues faced by females on the spectrum, from diagnosis to presentation
  • the provision of mental health services, and health provision more generally, such as Acute Care, GPs and Maternity Services
  • Provision of Social Care to individuals on the Spectrum
  • Reasonable Adjustments and Autism in the context of wider Disability landscape
  • Employment and Education
  • Parenting as a woman on the Spectrum
  • Relationships when one or more person is Autistic

This is the point where I have to hang my head slightly. I have always been skeptical about the realities of someone living with autism, compared to the top-down provision for us as a group. I’ve felt let down and often ignored and thought that much of the time much of the work being done was a box-ticking exercise. The large documents and spreadsheets produced in response to Government requirement can reduce you to a statistic, which is never a nice feeling

Participating in the APB revealed exactly how vast the task simply is; reaching into so many aspects of public sector work, that the amount of coordination is quite staggering.  Similarly, I was left knowing just how much more there was I needed to think about.

In the meeting the Probation, Criminal Justice System and Courts were covered, the aging population with Autism, as well and provision for service transition from children’s to adult services. Housing and employment were discussed extensively. Even within mental health provision you are talking about Forensic Services, Child and Adult Mental Health, as well as a myriad of specialist areas such as Perinatal Mental Health.

I don’t feel it is appropriate to discuss the exact content of the meeting as I feel much of it should remain confidential. I did however, gain an overwhelming sense of just how committed everyone was to doing a good a job as possible, for the benefit of the Autistic Community in Derbyshire as well as the people working with them.

When the time was right I was able to comment on matters being discussed and use my experiences, referred to indirectly, to offer some insight into how things might be better achieved. It is a really great feeling to walk away from two to three hours work and feel like I have made a positive change and helped other people in a complex undertaking. Since the meeting a number of further opportunities have popped up for me to help, for example, create content for the APB which I am hoping to become more permanently involved in.

I know that it’s not possible, but if many more people could have the chance to sit in on an APB meeting in Derbyshire it might just help relieve some of the very real frustrations experienced. As a group of about seven thousand people in Derbyshire Autistic people are a large group, but relatively small in terms of the overall numbers who live here. We have a tiny amount of resources made available compared to other comparably sized groups, and possibly are far harder to quantify in terms of managing us collectively. Although at some level, you have to work with numbers and statistics rather than individual stories  to work effectively. However, what the spreadsheets and graphs don’t communicate well to the reader is the scale of the work that is being undertaken and the humanity of those doing it. Jenn, took on the job working as the adult lead because her eldest son is on the spectrum and I hear many more stories like this; from people who have seen or experienced the problems autism can engender, and who want to do something to bring about change for the greater good.

Peer Leadership Academy – NHS England and People Hub

This week I attended the first two of six days of a personal development programme run jointly between NHS England and People Hub after I was successful in my application to take part in the Peer Leadership Academy.

The Derbyshire PHB Network leader Tina Brown was kind enough to forward me the applicant’s information which I found intriguing and so I made an application, and was offered a place on the final cohort of participants.

People Hub is an incredible organisation, set up by several co-founders who have direct lived experience of personal health budgets and of working to develop them. One of these, an amazing individual, Jo Fitzgerald, who pioneered the model for the son Mitchell after realising just how much more beneficial his care could be if it was modelled around his needs rather than those of the provider. Sadly, Mitchell died several years ago, but his memory lives on in the work undertaken by People Hub and Jo continues to share her own story to instigate change for others living with long term condition as well as working for the NHS England team.

Every contact I had with People Hub prior to attending the event was brilliant. They were accommodating of and interested in any adjustments they could make to help each participant get the most from the event – a pretty large undertaking considering the wide range of conditions we all had. My first contact with PeopleHub was with Rita Brewis was very positive and her passion was infectious, a great ice breaker when undertaking something new.

The Leadership Academy itself was held at the fabulous Burleigh Court Hotel in Loughborough, just down the road from where I live in Derby. I stayed the night between the two days personal development programme to minimise travel for me. The accommodation was second to none, and we were all made to feel very comfortable.

The Academy itself was way beyond my expectations. The first big surprise was that the several members of the Strategy Teams for Personal Health Budgets and Integrated Personal Commissioning were working along side us as well as presenting to us, which was fabulous. So often you attend events such as these and can feel like a vanity project, where you are rolled out for media opportunities and little else.  One person I felt an immediate connection with was Alison Austin who is the Head of Policy for Personal Health Budgets. Not only was she the only other person staying at the hotel who had food intolerances but her personal style was open and direct which I can only embrace. Her nursing background and the people skills she had acquired working in Glasgow’s A&E are still apparent and her barely detectable Scottish accent which lapses back into broad Glaswegian when she is ‘off duty’ is great.

The amount of time that had gone into planning the Academy was evident from the start. The course content was well planning and thoughtfully delivered. The balance between conversation and presentations was well made and I felt far more comfortable about meeting my sensory needs, like walking in my bare feet than I had at other sessions. I received a much better overview of just what Personal Health Budgets aspired to be, as well as exactly what Integrated Personal Commissioning is.  My understanding of the health system as a whole, and simply how disjointed it is between NHS England and the service the patient receives greatly increased. Overall I now understand just why things take as long as they do to filter through, but the two days has essentially reignited my hope that the NHS can provide a more personalised service. These changes might take four to five years to filter through to Foundation Trust service providers, but it will happen because this is essential if the NHS is to survive and adapt to the current disruption it is being subjected to. We are all consumers who are used to increasing levels of personalisation. We switch out insurance or banking provider if we get a crappy service but of course have no other options if our health is poor, or have conditions requiring treatment.

A huge amount of the work involved was around developing those participants with lived experience to be able to contribute and speak about their stories to develop PHBs and IPC. Everyone undertook a Myers Briggs profile and Steph Carson, who is a trained MBTI facilitator, worked with us all over half a day to allow each of us to understand how our profiles and personal style could affect our communication and storytelling. My profile was a little unclear as I wavered on the Introvert / Extrovert scale. I took the two profiles relating to where I might be an decided I was clearly Introvert when reading about how this group can focus on details in the environment when under stress, like cleaning or organising cupboards, which I had done not three days before. Apparently when laughter erupts upon a profile read it is pretty conclusive, so INTJ it was.

When the People Hub team elaborated on just how we might contribute in the future towards developing the concept there was a tangible buzz in the room. Opportunities included the chance to speak to clinical professionals, take part in working groups and perhaps even eventually find employment with NHS England in the team!

Overall I absolutely loved the time I spent with both the NHS England team and their People Hub partners. The course content vastly over-delivered on my expectations and I learned so much. The Leadership Academy, like my MSc seems to have come at just the right time to forward my new goal of helping others on the Spectrum get a better deal wherever and whatever their circumstances. I’m really looking forward to the next session in June and can’t wait to see what opportunities might come about because I’ve taken part.

 

 

 

Introduction to Autism – Derbyshire NHS Foundation Trust

On the 22nd May I attended the first of several days training to be delivered by Derbyshire Healthcare NHS Foundation Trust. I had approached the county’s Clinical Lead for Adult Autism, Gaynor Ward, a while ago to see if there was anything I could do to help progress awareness in the organisation. Gaynor, who is a fabulous individual as well as being shit hot on Autism Spectrum, welcomed my input and we organised for me to attend over several one day courses as an opportunity to see what exactly was going on, as well as feedback and prepare for the intensive three days I am presenting at later in the summer.

I have to admit that I was feeling a little trepidacious about going into professional development as a patient. In the last five years I have had a huge amount of contact with many professionals in the organisation and have at times been quite critical of the service I have received. Initially when I first sat down I simply introduced myself as I didn’t want to draw attention to the fact I was still a service-user. I did however, run into two Crisis Team nurses who have attended to me when I have been struggling. One of them was the first contact I had ever made with this team and completed my first ever assessment (one of many). She had been a brilliant support over the months I had worked with her and I had a lot of respect for her professionalism. It was lovely to be able to update her on just how well things are going at the moment, and how my lived experience is becoming a driving force in my recovery.

The training was delivered by Gaynor and two of the Trust’s new assessors, Rosa and Anna. The format was fairly standard powerpoint most of the time, with some interesting diversionary exercises that included a Glen Campbell record and a word-search. Gaynor is also a self-diagnosed Aspie, and the ‘unique’ nature of some of the work we did shone with her alternative approach to engagement. Topics covered included the clinical side of the diagnosis and traits, presentation and challenges, as well as adjustments that could be helpful when working with Spectrum Adults. It was also heartening to see a lengthy discussion and specific mention of the different, and often misunderstood, presentation of women.

The team of three split the training well between the topics and their specialities of Clinical/Nursing, Psychology and Speech and Language Therapy complemented one another well. Despite the pace being steady, the content delivery was intense and although seven hours were given over to the exercise there was still a large amount of content that needed to be skipped over because there simply wasn’t enough time to cover everything off.

The best bits by far for me were when the trainers and participants recalled personal experiences.

Anyone on the Autistic Spectrum is likely to be unique and the old adage of having met one Aspie means you have met one Aspie rings very true. Without mentioning names and dealing with the subject sensitively, real life examples expanded out the quite dry subject matter of Autistic presentation into something living and breathing; the reality of nursing practice as I understand it. Most people in the room had lots to say about people they had worked with in the course of their careers and there were also a number of lightbulb moments when realisation erupted at just what had often been baffling was it fact someone with Autism.

The room’s engagement was highest at these points and during the feedback session I contributed to afterwards I reflected back these times were when people had the most to say. Unfortunately the political correctness fairy made an appearance and discomfort was expressed at knowing how people might feel when asked to discuss this kind of thing. I certainly can’t speak for everyone on the Spectrum, but I do know that given how direct and forthright was mostly are, I would be perfectly happy for anyone of the professionals I have worked with to share their experiences of me if it meant that colleagues of theirs would gain greater understanding into my experiences and for others to benefit as a result. There was so many people on the Spectrum with comorbid anxiety and stress that anything that can be done to forward our cause is a bonus for me.

The three trainers were a great team to interact with, mainly because the breath of fresh air of their understanding is so welcome. One of the chairs behind me was squeaking loudly and repeatedly halfway through the day and I ended up having to nip out and have a few minutes flap (see here for stimming if you are unfamiliar) in the toilets because it got too much to deal with. I told them about this and the whole situation was met with some mirth, which was lovely. I felt comfortable enough to share something that has become intensely private because of the humiliation I was subjected to as a child when i did this in public. Overall, despite having just met Anne and Rosa I quickly felt very comfortable with them, even though my social anxiety spiked at feeding back directly on their work when we had only just met.

As a group we spoke at length about where and how I thought the content and delivery might be tweaked.

Gaynor, Anne and Rosa were all very receptive, and much scribbling indicated (at least I hope) that my ideas held some merit for consideration. As the one day training is going to be conducted by different people across each iteration I am going along to all three days to see how everything develops. There is also a chance it seems that there audience type might be made up of different staff disciplines, so seeing just how each might respond, as well as the content change is going to be fascinating. I also had some quite silly ideas about audience participation that could be used to increase the understanding of some of the very real challenges Spectrum individuals face on a daily basis. These should be included in the intensive training and seeing how they impact is something I’m really looking forward to.

The most insightful and valuable thing that I took away from the day was the chance to listen unobtrusively to the staff point of view. Autistic rights are something I feel very passionate about and I know that I can at times become confrontational, especially in a crisis, if my individual differences are poorly understood. This is simply because things could be so much easier for everyone with a few small changes. I try not to, but can get caught up in my own world-view and keeping in mind that mental health nursing  is highly stressful, you can forget that people who work with you are doing the best they can in a system that is poorly funded and not very fit for its current purpose.

Despite the 2009 Autism Act, the commissioning of services and development of staff for Spectrum individuals is really still in its infancy. There is a huge strain on all areas of the health service in this capacity, with waiting times in Derby topping three years recently, something that is now at last being positively addressed.

The chance to hear and see the genuine concern by the teams and individuals who attended reaffirmed my faith in the work that they do and was a very needed reminder that each and everyone was a human being just like me. As much as I dislike being treated as a diagnosis, I have at times forgotten the humanity of the people who work with me, just as mine has been temporarily mislaid.

 

Current situation with mental health services

(Or just why I might discharge myself from everything in 2 weeks because the mental health system is traumatising me.)

I’m currently supported by a complex team of multidisciplinary staff which include a Community Psychiatric Nurse in the Recovery Team, a specialist Social Worker in the Mental Health team, a Community Psychiatrist, a Talking Therapist working with me in Eye Movement Desensitisation and Reprocessing, and a specialist Occupational Therapist that helps with sensory processing issues. I have been well supported in the last 12 months by my therapist and CPN, however at the end of January, to say the wheels began to fall off is an understatement.

I underwent a course of intense therapy that resulted in part,  with me being admitted to a crisis house for 2 weeks.  My illness delayed a number of vital actions I needed to take such as finding and recruiting a new personal assistant to help me at home, and so my recovery has been stressful but I have got back to good health. Since then, the really frustrating and sad thing at the moment is that the most stressful part of my life is attempting to get any sense and commitment out of the mental health services I work with

About 5 weeks ago (bearing in mind I was suicidal on the 21st February) my CPN let me know by email that she was starting a new job and could no longer have me on her caseload. I also found out that the colleague I was being transferred to was on a temporary contract via a recruitment agency. I am autistic and so unexpected change is always a big no-no for me, as well as really needing consistency and familiarity. Obviously all aspects of this new development raised issues for me, not in the least because my new CPN could leave at any time with little notice.

After I fed-back via the PALS service this decision was reversed, however I still have no idea who the replacement might be, and just when the transfer should be taking place. This has been ongoing for about the last 5 weeks. Reason given is that the manager that needs to make the decision is currently on holiday.

Additionally,  a week later, my therapist who I work with via the Talking Mental Health Derbyshire, informs me that the decision has been made to transfer me to clinical psychology as the level of distress I had demonstrated meant they could no longer work with me.

I just want to put this into context. I have been discharged, halfway through a course of therapeutic treatment, with a therapist and an environment that I am familiar with and trust in, with no discussion about what I need or want. As far as I understand, the transfer to clinical psychology could mean beginning at the start of another assessment period with a new therapist who may not even be able to offer me EMDR therapy. This is  after I have spent 18 months doing just this with the IAPT services, following a referral from the specialist nurse consultant who diagnosed me with ASC.  However as nothing has of yet been provided in writing as per my reasonable adjustment request I am not sure either way. The interesting thing is that my conditions haven’t changed, my presentation hasn’t changed, it seems like the only thing that has is the perception of me as a patient in relation to services provided, and that entitles me to be dumped into another area without the least warning or thought for how this will affect me personally or the work I have been doing for unresolved trauma so far.

When I found out about the transfer to clinical psychology it only came a week after the email about my CPN changing. Putting this into context , I don’t deal with unexpected change well, so to get the double whammy I’ve just outlined resulted in a full meltdown in my therapy appointment. Bonus for me. The other hilarious thing is that this kind of meltdown (which is well documented as a trait of ASC when people with the condition are put under enough of the right kind of pressure) is just what is being used to justify a diagnosis of Borderline Personality Disorder of which you will hear more shortly.

I asked for a meeting in the following 2 weeks to discuss this. Fast forward 3 weeks and guess what? Nothing. Another contact this time via phone a week ago. “Someone will be writing to you in the next week”. Guess what? Nothing.

The thing that really frustrates the hell out of my about this is that every little thing that you do becomes pathologised, like the meltdown I mentioned, leading me to the the last issue I am debating whether to take further or not. My diagnosis of Borderline Personality Disorder.

This was given to me by a Crisis Team psychiatrist in 2015 sometime. I would not know or have found out about this other than for a letter I requested be written in support of a benefits claim I needed to make.

At the time the diagnosis for BPD  was made I already had a well established diagnosis for Autism. Despite the fact that there is well established understanding amongst the medical establishment that women on the spectrum can be misdiagnosed with BPD (see links below) I am still no further to resolving this that i was in December 2015.

Despite me presenting this and other evidence about how I behave being explained within the framework of ASC (which I am happy with the validity of) 2 years later I am still waiting to even be seen by a psychiatrist who has got enough consistency of contact with me to begin to establish if the diagnosis is valid or not. I just want to be clear about the BPD diagnosis as well. It was made by a crisis team doctor and his team who, given the nature of their role, cannot really say that they had an opportunity to reach a balanced and historical point-of-view of me. No psychiatrist in Derby has even seen me more than 3-4 times. No-one has ever taken a full case history, no-one has asked me about my presentation in childhood, or my twenties. The only time the crisis team doctor in question ever spoke to me prior to making his diagnosis about this was after I had been dropped to the adult psychiatric unit in a taxi because I was too distressed to drive. I was then left for nearly an hour in a highly stimulating environment, which rendered me needing to hide in the reception area behind the seats, curled up in a foetal position with my eyes screwed shut and my hands over my ears. I did not probably even have mental capacity to have the discussion about BPD or any other diagnosis, but, like most staff I have encountered, because they know very little about high functioning women on the spectrum, they were unable to recognise this.

I have had several contacts with my latest community psychiatrist, who is a nice guy and also a locum.  We have discussed my BPD diagnosis and how it could just as easily present as one thing as another. I guess what is boils down to for me is that no-one has ever actually explained to me satisfaction just how I meet the diagnosis of EUPD.

Admittedly I have some of the  traits, such as infrequent self harming episodes and occasional suicidal behavior, however I have a clear idea of who I am, my goals and relationships in life, I am self disciplined, and generally not aggressive. I do not have issues with recreational drugs, alcohol or binge eating. I am in a stable relationship and no issues with my parenting have ever been identified, despite several referrals into social care because of how ill I have been in the last 4 years. I have also been offered no specific treatment for this personality disorder that supposedly I have despite the 2 year old diagnosis.

I’ve also done some reading on the DSM5 in relation to personality disorders and their diagnosis in general. There are a few gems in relation to me:

  1. The pattern is stable and of long duration, and its onset can be traced back at least to adolescence or early adulthood (Criterion D). [How can you tell this if you have never asked?]
  2. The pattern is not better explained as a manifestation or consequence of another mental disorder (Criterion E). [I have tested as having clinically significant level of unresolved trauma symptoms.]
  3. or another medical condition (Criterion F).  [I had pre existing diagnosis of high functioning Autism.]
  4. The diagnosis of personality disorders requires an evaluation of the individual’s long term patterns of functioning, and the particular personality features must be evident by early adulthood. [This sounds like a case history to me, which I definitely haven’t had in Derby].
  5. The clinician should assess the stability of personality traits over time and across different situations. Although a single interview with the individual is sometimes sufficient for making the diagnosis, it is often necessary to conduct more than one interview and to space these over time. [ So being assessed by a crisis team doctor, who spoke to you once about your experiences in relation to the diagnosis in a state of high distress might not be entirely appropriate?]
  6.  The development of a change in personality in middle adulthood or later life warrants a thorough evaluation to determine the possible presence of a personality change due to another medical condition. [Like the preexisting diagnosis of Autism that has been well established previously combined with the stresses of having a new baby?]
  7. When personality changes emerge and persist after an individual has been exposed to extreme stress, a diagnosis of posttraumatic stress disorder should be considered. [my exposure to extreme stress has already been established in other areas, but not discussed in relation to my diagnosis for BPD}.

Everything that you do becomes a trait of your mental health issues. I am conflicted, distressed and now feel I am becoming traumatised about my BPD diagnosis and how it has been dealt with to date. I know on one level that it doesn’t make any difference to me as a person or my personal relationships, however it still doesn’t sit with me right. One day I can say it doesn’t matter I’ll leave it, but there is still a niggling feeling that this just isn’t the right thing to do, that I should fight for what I think is the right diagnosis. However, the fact that I have changed my mind several times about this and discussed these changes with my CPN is held up as an example of being impulsive, and used for further justification for the original diagnosis, just like my infrequent meltdowns are held up as example of anger outbursts.

At the moment I feel like I am ready to reduce the amount of support offered to me, but trying to get a coherent plan in place to achieve this is proving impossible. It is not right that people who are vulnerable (and I don’t consider myself to be that vulnerable at the moment) should have to chase and chase and chase to get anywhere. I am at the point now where if I can’t get some kind of coherent decision made I feel like the only option left open to me is to discharge myself from all services, as the amount of grief this is causing currently far outweighs the benefits.

Should this really be it though? How on earth can anyone say that good mental health provision is being made when I am trying to challenge a diagnosis and put in place a plan to reduce support and i can do neither in realistic time scales. it has been nearly 18 months for the BPD diagnosis and over a month for sorting out plans, and I am no further ahead in either camp.

The only reason why such crappy and piss-poor service goes unnoted it because it is not spoken about, and because of the stigma around mental health. It’s time we changed this and I’m proud to add my voice to the growing number who are talking about what is wrong with mental health provision and just what needs to be done to change it.

(As a small and positive post-script I would like to offer my thanks to Dom Cushnan who has encouraged me to blog about my mental health experiences. This is the first of these, and it is a really great step forward for me to begin to speak about what is and has happened in public for the first time.)

 

 

 

 

 

Tactile Tour Facilitation | Derby Museum and Art Gallery

This afternoon I had the pleasure of assisting with a session to learn more about the audience experience at the Derby Museum and Art Gallery  for visitors who are partially sighted. Having very different sense perceptions myself, because of having Sensory Processing Disorder (SPD) I am always curious about how others with different sense abilities to the usual, and my own, perceive the world. I was also curious to see how a ‘tactile tour’ compiled by a fully-sighted and neurotypical (NT) programmer would compare to the reality of a partially sighted experience.

Although the tour was created around sensory elements of the collection at Derby Museum and Art Gallery, the experience of the environment itself was much more insightful. Walking around with the group opened up a world of possibilities about how hazardous a space could possibly be, with changes in floor material as well as low level obstacles such as rope barriers at knee height all creating issues.

Viewing Joseph Wrights with a magnifier
What became apparent quickly was just how much more there was to think about than just what parts of the collection could be used to best effect. Also, the lack of understanding about the environmental factors that could be considered tactile surprised me. I have found that NTs tend to be very sight-focused, to the exclusion of the other senses. There are a myriad of different textures and sensations about the museum building. From the cool leather Chesterfield seats in the Joseph Wright Gallery, to the original lead glass panels in the doors opposite the Egyptian mummies.  The different sizes and textures in the rooms changed the sounds, temperature and air sensations on the skin. Varying materials underfoot contrast as you travel around the space; hard and creaking wooden floor-boards with quiet and soft cork tiles.

Leaded glass window panes create unexpected texture
Improvements in the visitor experience were explored. How to make displays behind glass more accessible for example. In the Notice Nature gallery small LED torches were available to see the detail in the displays of insects, These dramatically increased the contrast and detail recognition available to our group of visitors. Lighting generally was found to be a quick fix, with the preference of the group being to raise lighting levels across the board. I thought how this would come into conflict with my own sensory needs, and the difficulties exposure to bright lights can cause me.

Tactile marble touched
The greater subject of balancing the accessibility needs of different groups into a visitor experience was raised. The Silk Mill building, which is about to undergo a full renovation into a Museum of Making, will be an amazing test case for this cause. Given that the building and thus the visitor environment, is being built from the ground up, the opportunity to integrate the needs of different groups could potentially be done. Designing the lighting system to have variable capabilities across both the ambient and display lighting would be am amazing place to start. This capability would need to be built into the final programming of the space; perhaps with particular visiting times for different groups, as Manchester Museum currently offers, so that accessibility is as universal as possible.

As well as learning loads about the visitor experience from a different point of view it was a chance to see how a museum relates to different audience groups and explores improvements. We spent a good five minutes in the disabled toilet discussing (certain aspects) of the user experience and where the pinch points might be – getting some rather strange looks when all seven trooped out one after the other!

Exploring the Mummy Gallery
We finished the tour with a handling session, exploring objects from different aspects of the collection. Medieval tiles and obsidian arrow heads were passed about and discussed. The three dimensional aspects of objects such as these could so easily be included within the permanent exhibition space, making use of the 3D scanner and printer, as I had seen at the  Arch’ and Anth’ Museum at Cambridge University. Any surface which has texture and relief could be reproduced, with the added advantage of allowing children to explore with their hands, as well as including another sense in the experience.

I really enjoyed meeting the group of volunteers who shared their time and experience and I’m looking forward to the next part of the project.

 

 

How do you?

How do you tell your child that you’re autistic? When do you tell him that the way your brain works, the way you feel and think and perceive is different to the way he thinks and feels and perceives? That he is like the 99% of other people on this planet who seem illogical and emotional and completely unfathomable to you.

How do you tell him that you spent the first 4 years of his life watching for the signs of the same in him?

Petrified that he might have to live through the same pain and unknowing and bullying and ridicule that you have. Relieved after holding your breathe for 10 seconds in a pub on a Saturday afternoon in Derby when you did the easy test for kids to detect if they might be on the spectrum and he passed. He grinned and got the joke and understood that you have played a joke on the doll Sally Anne and she won’t know where you have hidden the ball.

The next worry though is when will he start to see the differences? The realisation that his mum is ‘different’. Not in the way that someone with a physical disability might be, but in the intolerance of noise, the stupid embarrassing comments, the poor social skills and weird habits that you see around your home.

How do you tell him that the real problems for you started when he was born?

You see I didn’t know then. I had an inkling, but nothing definite. How do you explain that this little thing that you loved so much that was so innocent turned your life upside down. Not in the way of most people’s, with sleepless nights and money worries and thinking about going back to work full time or requesting part time hours.

I mean a descent into hell of mother and baby psychiatric wards, of social services referrals full of errors, and taking on a whole mental health ward full of child ‘experts’ to get some vindication and  validation. That you weren’t ignoring your child or trying to misconstrue what he needed, you just had reached what you could cope with and that the cutting helped bring things back under control so that you could get back to him. Not that you wanted to end your life.

It meant moving from a life of running your own business as a free-lancer, managing a team of people, socialising, traveling, having independence and financial stability and  partner who was just that nothing more, into a world of being unable to cope, of living on benefits and feeling sick when a brown envelope from DWP lands on your door step. A world populated by assessments and social workers (mine not his) of Community Psychiatric Nurses and Support Workers in your home. It meant having to call your partner, the father of your child, your ‘carer’, and at the time of writing not having worked for 4 years.

How do you explain all this to a little boy who you want to protect from the ills of the Earth, the bad adult things that go on? How do you explain away the scabs on your right arm, the reason why he is shipped off to Grandma’s again at short notice, why mummy has moved out into the ‘poorly house’ across town?

I don’t know and I don’t think anyone else does.

What I do know is that it is important to appreciate what you have. Love the child you have now, rather than the sibling that isn’t really going to be possible with the extent you struggle to look after the first. Love the fact that there are good days and that the condition is manageable, and with the right support these seem to becoming more frequent. Love your friends and family because they are what make a difference, not presenting to PLC directors in London. Love the fact you have enough education and capability to actually fight the crap that was thrown at you in the name of professional knowledge and came out the other side victorious.

Some days I love the fact I am on the spectrum and wouldn’t have it any other way. Other days I hate it, and it makes me want to die. I am still figuring out just what that means for me, but life goes on.

 

 

Human Library

Two weeks ago I volunteered to be a book at the Derby Human Library, a great idea where people describe themselves as a book title and others can book them out to ‘read’, or find our more about a person who might otherwise be subject to stereotypes.

I first can across the idea when Vanessa Boon, the organiser tweeted about the library, asking for volunteers who would be books. I have to say that I was intrigued and agreed to contribute across a number of subjects including ‘Autistic’, ‘Mental Illness’ and ‘Bisexual’. I am quite open about the first as I consider it to be a characteristic of my personality. I talk about my history of mental illness where appropriate as I genuinely feel that there is a still a great deal of stigma around discussing it as a subject, despite the fact that many people I know have close friend or family who has experienced quite serious mental health themselves. Unfortunately it is never brought into the public unless someone else starts the conversation.

My sexuality is something that I have generally kept private. I have known I was bi’ since I was about 14, and feel part of a distinct group, seperate from gay or straight. However prejudice is still rife, from both sides of the fence. Many people consider the fluidity of those who are attracted to both sexes to mean ambiguity, or even worse that you are easy and happy to sleep with anyone individual. I have not in the past been happy discussing it with work colleagues for example.

Anyway, the day was an amazing experience. Of 27 visits that were made to the library I spoke with 5 people, and it surprised me the topics that people were interested in; 3 for bisexual, 2 for mental illness and none for autistic. For the sake of confidentiality I cannot of course mention any details of the conversations, but simply add that the breadth of human experience is a beautiful thing and to be able to plug into it in a different way for a little while is an amazing experience.

If you’re interested in finding out more about the Human Library, there is a Facebook page for the UK  and also the Derbyshire organiser has a Facebook group to let people keep up to date with news. You can always contact Vanessa Boon on Twitter – I’m sure she’s be happy to answer questions.

Happy reading 🙂

Derby Local Offer event

I attended the Derby Local Offer event at Derby QUAD last Friday. It hosted a number of organisations who work with young people (read up the the age of 25), who have disabilities and other additional needs.

I went in a number of roles. Firstly to see if there was anything relevant for the Autism organisation I am involved in, Right of Way for ASD, second to see if there was anything that could also work for me as an Autistic individual and third to see if I could begin to figure out why services seem to stop for people who are aged 25 or 30 respectively.

Speaking to a lot of the voluntary organisations such as Umbrella, or Derby City Parent Carer Forum  and the like it is understandable. Most of them have been organised and established by groups of parents frustrated with the lack of organised support and facilities for their children and families. In these cases it is of course only natural that the focus should be on children, and increasingly on young adults as these families grow up. It still highlights the shameful lack of understanding and support for families with additional needs such as those with high functioning Autistic children in Derby. You do wonder that nobody seems to give any thought to these young people as they grow. There are also the rest of us who received our diagnoses as adults or who just got too old and so abandoned in the wilderness.

Despite everything, there are some really good ideas coming through in the city…

Derby Shared Lives offers support to adults who are vulnerable, either in their own home with a more typical support worker visiting, or alternatively by living with a host family, either for a short break or as a member of the household. Host families are trained to assist their visitors, and will be involved with things like social or household skills, getting out into the community or support in other ways.

Derby QUAD holds supportive environment screenings, which include subtitled films for deaf audiences, described films for partially sighted or blind audiences and adapted screenings for those with sensory issues, (involving reducing volume, keeping the lights up and allowing people to move around. The demonstration of these on the day of the event gave a good indication of how they differ from the usual film showings).

The St James Centre in Normanton supports individuals and their families with complex and additional needs between the ages of 3 and 35 years old. They run a range of services, from social events, employment support, and host a disabled women’s social group. Additionally, weekly sessions for children are held across the week under the ‘Fun-abil8y’ banner.

Disability Direct manage the Lottery Funded ‘the stuff’ website that acts as a great focal point for information relating to services and other organisations for young people and adults with additional needs. Like most things the service is for those who are up to the age of 25 years old, or over 50 years old. When questioned about this, the response I got was that “this is the requirement for legislation.” it was suggested that I write in to point out the disability doesn’t cease for 25 years in the middle. it would be good for somebody to perhaps pick up on this and make provision without needing a poke though!

Jumpz Fitness hold fitness classes for individuals with additional needs or a disability. They take place once a week at Derby College between 11 and 12am. THe organiser Michelle has experience of working as a support worker and is also a competitive powerlifter. I spoke to her at the event and she was really engaged, describing the project as something that allows her to combine both the passions in her life.  Jumpz also works with an Aikido instructor in Milford to provide adapted lessons, weekly on a Sunday.

If there’s anything else you’re aware of please let me know. It would be good to be able to make further connections.