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Being an autistic parent, to someone who may also turn out to be an autistic little person can be really hard.

Since M was a baby, I have picked up the subtleties of his way of being that whispered to me about him also being somewhere on the spectrum. When he was a baby he refused to sleep when I put him down any so I carried him everywhere. The comments I recieved were generally unsupportive, “…he will never go to sleep if you don’t leave him alone.” Imagine then how it felt to discover that he has his own sensory needs, including a high level of sensation seeking in order to keep himself regulated. 

This was only the beginning…

The lack of authority the voice of a parent has, even within their own family, when they are trying to seek out support for a child has astounded me. The feedback I have recieved in the last four years around M’s own neurodiversity has ranged from suspicions that I was making things up or imagining them, through to the idea that he was simply copying me. The idea that an autistic person, who is also his mum, has no idea about how he experiences the world simply shows how ingrained the undermining of neurodiverse voices are within social and family life.

The same people have now started listening (kind of, but they have also just changed the unsuppportive narrative to fit the new set of facts), but only after I have spent a fairly large sum of money on a sensory assessment and specialist eyetest for him. Many autistic parents and autistic people simply do not have access to the personal resources that I am able to draw upon. M has, now, been put forward for an autism diagnosis which I am not really sure is a blessing or a curse. I guess for me, he can eventually choose whether or not to identify with ‘being autistic’, or alternatively simply being neurodivergent, but for me it all boils down to him being able to access support that he needs in a timely and appropriate way. The worst thing I coulds imagine happening is him having a crash, emotional or educational, like me or his dad experienced and having to wait for months or even years to get the support he needs as a young person or adult. Services for autistic people who can mask better are so poor as to be non-existent most of the time, so I would rather take advantage of the additional opportunities to develop his own and my understanding as early as posible.

Ultimately though there is a huge moral cost to seeking a diagnosis for another human being. Either way, there are long term implications for him and his life. There is a huge weight of responsibility around being a parent anyway, but to associate him with a diagnosis which is still so stigmatised and poorly conceptualised is an incredinly hard thing to do. I can only hope that when he is grown we have moved on from considering autistic differences to be pathological, particulary given the strength of alternative frameworks such as those of monotropism or the ‘double empathy‘ concept. I know I am going to do everything I can to make this happen.

As a researcher, I feel like it is,  intellectually, the wrong thing to do. As a parent, knowing the amount of support and scaffolding M needs at home dealing with the regulation issues and consequences of masking all day at home and with other people, I feel like it is the right thing.  I guess that I just have to let me heart and the research guide me.

Ultimately, if he has no diagnosis and needs support he is really up shit creek. If he has the diagnosis and we can put support in place early, hopefully he will be able to avoid most of the issues that his dad and I have coped with. Most importantly though, I want M to have as much time as possible to really know himself and be able to answer, with a coherent reason and  confidence when people ask him why he does the things that he does.

This week I was walking and the trees spoke to me.

They told me of their memories. These trees we plant, interspersed between our tarmaced roads, and brick boxes. That we cut and maim and kill as we desire.

These trees remember and they weep.

They remember the primordial forests, where they ruled the land and stretched unbroken for thousands of miles, from coast to coast.

These trees remember touching their branches, their stems, their leaves, their roots with one another. Towering into the sky, supporting it and sheltering the life below that ran abundant beneath their boughs.

These trees weep and stretch in vain for their neighbours out of reach, stunted and contained in the next patch of grass.

These trees remember and they weep.

I remember with the trees. I know the memory of trees. I know the forests, the primordial forests and I weep for the trees.

 

My name is Jenn and I am autistic. It could however just be that my name is autistic and I am Jenn. You see both these concepts are interchangeable in my head; existing the same space. They join my other identities as a mum, a fashion designer,  a digital marketing professional, a business owner and mental health academic and also a pansexual genderqueer person. As you can probably gather I also don’t fit the stereotype that history and the media have consigned us [autistics] to, which is a curse and a blessing in equal measures. A lot of people neurotypical people  might struggle to understand so I am going to try and explain my perspective on this thing which is me, whilst acknowledging that every autistic person is different and that I cannot speak for all of us.

What I do know is that if everyone could conceive a basic understanding of autism, the strengths and challenges, that loosely unite us, life could be very different, and much better for autistic people everywhere.

The presentation of female autism is poorly understood and as a result many of us fly under-the-radar. I didn’t receive a diagnosis until age 33. I had always known there was something different since I was in my twenties, mainly because I had experienced the same negative outcomes in many different areas of my life, with many different people. In family, education, work and intimate relationships I kept hearing the same words: selfish, difficult, arrogant, fussy and rude. I needed to understand why this was and began a  journey that is still ongoing and at this current moment has led me to write about where I have come from.

Much of the time I have had to forge a path, as none existed. It has included, amongst other things, successfully challenging a diagnosis of Emotionally Unstable Personality Disorder, understanding my brain chemistry and creating a regimen of food supplements as an alternative to psychiatric medication which is too strong for me,  finding ways of accessing Occupational Therapy treatment that I was told was not available via a Personal Health Budget and researching specialist consultants to find the right treatment for my menstrual cycle, which makes me suicidal. These are the headlines but the really important things are being able to finally feel confident as a parent to my son, regaining my status as a partner in my relationship and being able to help others on the spectrum who are struggling with things I have overcome. This process to date has taken fourteen years, and the last five have been particularly hard. I have been a psychiatric inpatient five times with many more crises, but I have coped and it has afforded me unique opportunities to contribute my lived experience in the work of NHS England working across personalisation of care and support for long term conditions and mental health and also now in autism and neurodivergency.

This work is hard though. Not only am I sharing deeply personal experiences, existing in a neurotypical world is inherently fraught with difficulty. The daily bombardment of sensory overload I cope with because I cannot filter out the background like most people, means that I burn up huge amounts of energy just coping with this. By contrast, I have excellent social skills, make eye contact and am highly socialable. When I do, however, make a mistake that is attributable to being on the spectrum people don’t get that. Over time the negative narrative is internalised, whilst at the same time you learn to mask as much as you can.

In this way, autism becomes an invisible state. Invisible to those around you, because you don’t fit the stereotype and are as such unrecognisable. More fundamentally though you become invisible yourself, always rejecting the qualities that are autistic because they are so negative and pretending so hard that the lie becomes your reality. You lose touch with your essential self.

Expanding our understanding of what human means benefits everyone, whether on or off the spectrum. Appreciating this diversity and vastly different experiences of autism will allow the talents and needs of us to be integrated into society. We could go to work, access health services, have families and enjoy many other things that are often taken for granted.

Can you imagine having to leave a doctor’s surgery where you have taken your sick child because you are unable to cope with the lights and television blaring in the corner? Or trying to explain this to the receptionist who thinks I am just being rude and pushy?  I can, because it has happened to me more than once.

Adjustments in our places of work and spaces of community and care can make up part of the difference to close the gap and but the adjustment that will make the most difference, on both sides, is the one we can make in our understanding and consideration toward each other.

The first generation of children diagnosed with autism in the nineties are reaching adulthood and they are being joined by increasing numbers of older adults, like me, receiving diagnoses. We are not interested in the genetic risk factors, or being cured. We want to live well and contribute. Only understanding can achieve this., Our authentic voice needs to be heard to challenge the prejudice and stigma, and truly conceive of ourselves as autistic individuals and a community together, and only more like me stepping forward to speak out can make that happen

This week, alongside several other people, I am about to embark and what will probably turn into a lengthy and complex complaint regarding my treatment within the NHS.

This is sadly the third time I have had to undertake such a journey. The previous two related to both my experience as an inpatient and also being misdiagnosed. The latest, slightly different, is about my experience as a volunteer. 

This kind of thing makes me very sad. 

Despite all the policy and rhetoric, the NHS is really crap at integrating people who have a lived experience into the fabric of their organisation. So often it is just tokenistic and a tickbox exercise. in this case however, given that resolving this matter is a new special interest for me, I have the patience and motivation to see it through. I was really passionate about the work I was doing and had some amazing colleagues that I worked alongside. I owe it to them, myself and anyone else who is recruited after me to do my best to make sure things improve.

Speaking about it to friends this week though who were quite cynical and predicted ‘nothing would happen’ made me reflect upon what I do though.

The answer I have reached in response is that social change, change for marginalised individuals and communities, does happen but it is like the sea slowly grinding the shore into sand. We know it happens because we understand the concept of coastal erosion. We can’t actually witness solid rock slowly transforming to tiny grains of dirt though, and this is what social change is like.

Observed across years and decades, the impact of things like the Independent Living Fund, Civil Rights Movement and the Mad Pride cannot be denied. People may not have perfect lives, but we are not locking those with physical impairments up in institutions and mad narrative is taking a place at the table in academia and mental health practice.

So rather than live a hopeless life and take no action, I would rather consider myself a tiny wave in a vast ocean of people who are all chipping away at a cliff of injustice and discrimination. To all intents nothing may not be achieved with this one person, but people will think more and differently next time.

I may only create one tiny grain of sand from this rock, but hope this legacy will join thousands others so other people in the future can live a life more free of pain and suffering than mine has been.

Live with hope. It’s what makes life worth living.

 

 

 

 

 

 

There are umpteen different local and national phone lines available for people who are experiencing distress or looking for someone to talk to, but having been in this situation myself these can often feel lacking. I have recently become aware of several community based projects specifically designed to support the citizens of Derby face-to-face, at different times of the week and day.

Night Bus, Chatterbox Cafe, Allenton, Derby.

The night bus has been set up to give people in distress or who are struggling a place to go between 2200 and 0100 every Friday and Saturday nights. The nightbus is hosted by the Chatterbox Cafe, St. Martin’s Church  and has been developed by a local Community Interest Company, Headhigh (the website doesn’t contain a great deal of information and this is one of the sad things about the night bus, it isn’t really being promoted very much).

 The night bus will be staffed with volunteers who have recieved training to support those experiencing distress or mental illness, many of whom have had similar experiences, so there is a great element of peer support in place. People visiting will be able to find out about local services tha are on offer, or else just have a chat and a warm drink if they prefer.

The cafe timings have been decided based upon research that identified these times overnight at the weekend as when people can struggle the most, together with the least support being accessible.

Hannah Fields Community Garden, Normanton Lane, Littleover.

The Hannah Fields Community Garden is a fab little project that currently opens 1000 to 1600 (weather permitting) on a Thursday, Friday and Saturday. Managed by another local CIC and run by a trained mental health nurse, Angela, the organisation has taken a previously neglected piece of urban greenspace and is in the process of transforming it into a thriving community garden and workspace. I have visited once, and met Angela on a number of occasions and have been really impressed by what she is aiming to do. None-clinical solutions to poor health and illness and prevention are at the top of the list of current priorities for the NHS. Projects such as this tick all the boxes for how better health will be achieved in the future. Specific strands of the project include training in forest school activities, growing and donating food to the local community and also working with local groups to develop sensory spaces, as well as being a haven for local wildlife.

Thrive Nutrition, Boyer Street Community Rooms.

Thrive Nutrition are part of a wider collective that brings together a range of people with different skills and experiences. The fab Lucy Kay, a nutritional therapist who practices in Derby runs a regular monthly event at Boyer Street which discussed a whole host of topics and naturally touches upon the benefits of good diet and nutrition for mental health and general wellbeing. Although not strictly a place of support for mental health, Thrive is a really great resource for people wanting to learn about how diet and lifestyle can support recovery from and prevention of mental illness and distress. There is also an opportunity to meet some fabulous and really friendly people, so encouraging social interaction and friendship.

Thrive also have an active facebook group with over 200 members, which is a great place to ask questions and find out about local events.

Local Vocals Community Choir, Westend Community Rooms.

A weekly, non-auditioning choir that was set up to encourage singing and allow a wide range of people to access the mental and physical health benefits of music.  Although I have not been to this personally I am very aware of the research that supports the benefits of community choirs such as this. Another important aspect to these choirs is that they created destigmatised spaces for those with mental health distress or illness. So often, initiatives like this are set up with the primary purpose of being places for people with ‘mental illness’ to go, and so create a place that is seperate from the local community and people who are not having similar experiences. In opening up such projects everyone benefits, with the dual advantage that exposure to people with mental distress is increased and discrimination and strerotyping are successfully challenged.

The choir meetings every Wednesday evening between 1930 and 2130. I can find no mention of costs to attend.

Derby City Life Links

Derby City Life Links is run by the fab Richmond Group, a mental health charity that also runs the Crisis House on Old Burton Road; a supportive non-clinical environment which lives its recovery based values.

This latest venture in Derby by the charity was only something that I recently became aware of, but it looks as though this might be the beginning of a number of recovery based projects in the city, such as organised peer-support and recovery college type classes. The website is an wealth of information of other initiatives and projects going on in the city that can offer different kinds of support (check out the ‘self help’ tab at the top of the page to activate a drop down menu with options). There is also a dedicated page for recovery education, wih specific classes looking at managing anxiety, mindfulness and meditation, confidence and relaxation.

The last service of note is the creation and support of a number of peer-support groups. A full list of those currently in existence is available, with group options catering both for interest and condition-specific accommodated. There appears to also be opportunties to seek assistance for those wishing to set up their own group

Happy Cafe, Derby QUAD, Derby City Centre.

Part of a national initiative instigated by Action for Happiness, Derby’s branch of the Happy Cafe movement is hosted by Derby QUAD on every third Wednesday of the month, between 1900 and 2100. The space is created for people to come together to discuss and support happiness and general wellbeing, with particpants beng sure of a friendly welcome and drink. The only downside is that the drinks must be paid for and the prices are reflective of the city centre location. 

A few moments in July, from the point of view of my camera…