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Late diagnosed musings.

About me (Autistic Teaching Assistant, Mum, runner and collector of sea glass.)

Receiving an autism diagnosis later in life has been a n eye opening experience. Being a parent to an autistic teenager, I had read plenty of books over the years, and could relate to lots of the social aspects, but couldn't see it in myself, until I read about Melanie Sykes (diagnosed autistic aged 51.)and saw some of the NAS articles with the #NowIKnow , about late diagnosed autistic women. I began to feel excited... did this mean that there were other people like me? That I wasn't the only one who felt out of place in the world.I tried to find out how to get an autism assessment, scouring NHS websites.Of course I was too terrified to actually go to the GP and ask, for the fear of being laughed at and told to stop being ridiculous, or be told that I'd managed for 48 years so it would be pointless to get a diagnosis.I never found an easy way of asking for a referral so I spent a couple of years, researching autism in girls and women, home educating my son after he crashed out of mainstream, and getting on with my life. But always having it in the back of my mind, was I autistic or was I just making it up? The uncertainty for me was difficult to deal with.

Then two things happened because of COVID. My GP set up an email system, where you can write down your request for an appointment, instead of having to speak to someone (I struggle with phone calls so much!). The other thing was that I heard about NHS Right to Choose, and an online psychiatry agency that would accept GP referrals.

After I plucked up enough courage to send the email, my GP was surprisingly supportive. The referral was all done online and 6 months later after some lengthy form filling .I had a 'face to face' assessment over 'Zoom' 
My only question for the psychiatrist ,when he gave me the autism diagnosis was 'Why did nobody ever notice?' His answer was that girls are very good at masking and adapting, to 'fit in'. I have been trying to 'fit in' my whole life, and it's pretty exhausting!

It's been 6 months since my diagnosis and I'm starting to find my true self. I've found an amazing online community which I truly feel a part of. I have a new job in an ND friendly specialist college. My passion is to support young people to thrive . I get to work with some amazing ND students, in an environment where I can hum, twirl and stim to my heart's content.

I still have lots to learn, about how to recognize my needs and make sure I don't burn out again. But I'm in a happy place. The diagnosis has meant that I can understand myself better, and I can live my life, without the need to conform . I can look back on past situations where I have struggled and not blame myself for 'failing'. And hopefully I can use my experience to help others, including my own children, and the young people that I work with.

It's great to read about the autistic adult support groups, starting in Bourne and Boston. I'd love to see something similar in North Lincolnshire . It's something I've thought about trying to establish, but that fear of the unknown is still holding me back! If anyone knows of anything happening North of Gainsborough I'd love to hear about it.

Brought to us by: Steph About Me: Sculptor, dog enthusiast, lover of comedy and biscuits.

What is it like to access mental healthcare as an autistic adult?

Many autistic people suffer from long-term mental health problems, burnout, or times of crisis. Accessing mental healthcare can be daunting for anyone, but autistics tend to reach burnout, or crisis point, when they are chronically overwhelmed, so the thought of accessing a service or bringing new people into the equation can prove a huge obstacle.

Here is my experience so far.

The crisis team are an emergency measure to keep you safe. The help that they offer involves a lot of talking. Personally, that is something I really struggled with. When autistic burnout is reached it is not necessarily the deep tiredness that neurotypical people presume. It is a physical short circuiting in the brain, and that is why some autistics experience skill regression, and have to relearn skills they once had. It can come from years of overwhelm, years of struggling to cope. I do find talking about what is on my mind solidifies my fears. There is never just one thing on my mind, I'm usually thinking about 50 things that are troubling me and to say them out loud is terrifying and can also feel quite shameful, especially if I don't know you and am feeling vulnerable. But what would have helped me? I can think of three things that in hindsight I think would have helped. I needed a plan - who was going to help me sort out practical things to do with money and housing while I was sick. Someone to talk to about the dozens of feelings I was having all at once to help me pinpoint what was potentially the most dominant feeling. And reminding of the things that anchor me to this planet, in other words my special interests.

Why do I think those three things would have helped? Well, I definitely suffered from skill regression, meaning paperwork and practical things became impossible. I have alexithymia, which could be understood as a lack of awareness of how you're feeling. But for me is an equal awareness of multiple overwhelming feelings. And the overwhelm had led to alienation, which is where special interests come in. They can be our way of feeling connection to the world.

In 2013 new legislation was introduced called Transforming Care. It provides guidelines for care providers when dealing with autistic people. It states reasonable adjustments must be made so that autistic people can access healthcare. We are lucky enough in Lincolnshire to have a team of people whose job it is to ensure health care providers implement this legislation. I ended up getting a lot of input from some people from the Transforming Care team which really began to turn things around for me. Now, looking towards what is available on a more long-term basis, I'm finding my options are very limited. I love the autistic brain, and I've spent years learning about how it works, how it differs from the 'typical' brain, the genetics, the comorbidities, it has become, unfortunately, one of my special interests. Which inevitably means that I'm teaching the people who are trying to help me. And it's exhausting. Plus, I don't have all the answers on how to get out of chronic overwhelm. And they can't be expected to either.

I was born in the 80s when it wasn't widely accepted that females could be autistic. I was diagnosed with learning difficulties and deafness by my GP as a baby. Ironically, I would be classed as gifted now, and my hearing is annoyingly sensitive. That is a world away from the situation that we're in now. Where females can, not only be diagnosed as autistic, but also receive some support. While this trajectory continues let's be thankful for online communities, where autistics share knowledge and coping strategies. And let's pass that information on.

Second Contribution From Steph

It's unfortunately common for autistic individuals to grapple with mental health challenges, given the many difficulties they face in daily life. However, navigating mental health care can be its own ordeal, as I've personally experienced.

Initially seeking help during a crisis felt entirely mismatched for me. The overwhelming influx of new faces, the pressure to leave my safe space, and the lack of understanding regarding neurodivergence only prolonged my recovery process. I found it disheartening to hear well-meaning but ultimately unhelpful platitudes like "things will get better" or "autism isn't a disability, it's a gift." Despite waiting for more practical assistance, as I had reached my limit, the support I received often missed the mark.

Verbal communication can be a challenge for me, but given the opportunity to express myself freely, I often find solutions. However, if my perspective isn't understood or respected, and instead, I'm met with behavioral interventions or coercion, I tend to shut down, negating any therapeutic benefits.

While I don't always want to be an educator about my neurodivergent experiences, I believe it's the responsibility of care providers to understand and accommodate them. Despite my efforts to communicate where things went wrong, my input wasn't always welcomed or acted upon.

An instance that stands out is when I explained my struggles with object permanence and emotional permanence, only to receive a generic email stating I was being discharged due to uncertainty about my treatment goals. This lack of follow-through and understanding left me feeling misunderstood and dismissed, adding to my distress.

Although I encountered some compassionate individuals, the overall mental health care provided fell short of my needs. Instead, I've found more meaningful support and guidance from fellow neurodivergent individuals.