There was a time when our UK Prime Minister talked about the pressures faced by all of us. How we needed to better support those in need both here in the UK and around the world, support the disabled, support those struggling with Mental Health conditions, support those in work, support our pensioners, support our children, support families, support those living alone, support those in work, support those who can’t work, support businesses.
Now the words have changed, he carefully and repeatedly says ‘recognise the pressures faced and the need to support businesses and hard working people’. Some groupings are not mentioned now, I wonder why…..
Caught the end of an interview with a UK politician who was giving his esteemed views on what was holding the country back and he specifically mentioned AUTISM…. That’s right along with Tariffs, energy costs, international conflicts, planning delays and the impacts of climate change, the cost of benefits, he specifically mentioned AUTISM….. He quoted the number of children currently diagnosed with autism and argued that it was clearly too high, and the rising numbers didn’t make any sense. He added that we weren’t seeing the same rapidly rising numbers in Adults…. And how far too many young people diagnosed with autism don’t get a job after they leave school, he argued reliance on benefits was a root cause of this. So if you cut the benefits available, more young people will enter (forced back into) the workforce. He concluded that the country needed to go back to some good old parenting with a sprinkling of tough welfare love. Welfare reform will over time stem the tidal wave of autism while reducing the tax burden on businesses and hard working taxpayers.
I keep hearing this argument more and more in 2025. Similar arguments are being directed towards a range of mental health and disability areas. Tough love will work and reduce the tax burden. One Government Minister even likened reducing disability benefits to cutting a child’s pocket money and encouraging them to get a Saturday job. Let’s not forget, Ministers usually closely stick to a script pre agreed by those at the highest levels of the Government. Those in charge don’t care or they are completely out of touch with the reality faced by millions they are supposed to be representing.
The reason adult autism rates are not rising is down to a couple of key issues. At the age of 18 autism support largely stops in the UK. Clinicians providing Child Autism Services do not have an equivalent adult service to hand an 18 year old on to. As a result large numbers simply drop off the system as adults. Relatively few General Practitioners (Family Doctors) have detailed autism training and it’s hard for them to make an assessment on the basis of a 3 or 5 minute standard length Doctor Appointment. As a clinician who worked with Hawklad explained to me, if an adult approaches a GP with an autism related issue, the busy GP will have little time to make an accurate assessment and anyway they won’t have any adult services to refer on to. So far too often GPs just end up offering some leaflets on mindfulness and possibly a course of Anti Depressants or sleeping medication.
That’s assuming that GPs are actually approached in the first place.
At school Hawklad was expected to put his hand up to get help with reading, or if he was feeling uncomfortable or struggling. But that meant announcing to his classmates that he couldn’t read something or having to publicly announce he was feeling uncomfortable, that was never going to happen. We might be in 2025 but we live in a world where way too many people have closed minds and the media still paint with inaccurate and harmful stereotypes. Autistic children still get bullied and pointed at in the school setting. Not only by children, sadly by parents as well. So Hawklad never put his hand up and the teachers assumed he was ok, the end result, he never got the classroom help he badly needed. Years later, he still won’t put up his hand with strangers or people he doesn’t trust. Even if he’s struggling, he is unlikely to call a GP for help.
The dust is now settling on what feels like a new world. A while back Hawklad had his last bit of support from the Child Mental Health Team. As the threshold for Adult Support is so high and because there is actually no equivalent Adult service, that’s it. The need doesn’t suddenly go away as a birthday is reached, but in the UK, the service does.
It was odd, I wasn’t sure what to expect with the last appointment. Maybe a number to call if he really needs support, maybe some pointers where he could seek help, maybe a support website, a handful of support guides. But in reality it was a simple ‘best of luck’ and you will need to speak to your Doctor if you need help from now on. However Hawklad had already been warned that most Doctors support will be limited to Mindfulness Leaflet and the offer of Antidepressants.
Yes I’m concerned for Hawklad going forward but my heart really goes out to those who need way more support and suddenly find themselves cut adrift. I heard it described as a Trapeze artist who is performing a routine and suddenly finds the safety net missing. Maybe but just maybe the safety net is also there for the artist who can’t even make it onto the high wire. The artist who is struggling to even leave the house, struggling to function in daily life.
Without health support it’s down to self help, family and friends, thankfully Hawklad has some of that around him. But we need to recognise that most of us are not trained health professionals, effectively relying on a Wikipedia knowledge base. But at least it’s still support, importantly support that cares.
BUT many who are struggling are on their own, without any kind of local or specialised support. That can’t be right.
Language is so important. More than ever it frames the debate, creates headlines, fills social media channels and sadly can alienate, castigate.
We all have different views on society, on politics. In the UK, to me the last few years has been unremittingly grim. And yes I’m not the only one who thinks that.
Am I pleased there was a change in government last year, YES, maybe the right word is RELIEVED.
Am I pleased with the new government. NO, but to me it’s way less bad than what came before it. A bit of good stuff, some puzzling stuff, some bad stuff.
The BAD stuff includes LANGUAGE. I don’t like the language the government often uses in terms of Mental Health and Disabilities, in terms of the many needing real help. Way too often the language is grim, divisive, and riddled with stereotypes which easily make its way on to the front page of gutter newspapers. It portrays a real insensitivity and a clear lack of understanding on the real issues and problems many face during every day life. What happened to the so called enlightenment that society went through on how it sees Mental Health and Disability.
I completely understand the need to control spending, to ensure it’s targeted where it’s needed. BUT…
The language often being used creates the false impression that most on Mental Health and Disability benefits are intentionally work shy, have a choice to either push through any issues they may face to work or to choose to stay at home, lead a life of leisure paid for by taxpayers. How the rising mental health crisis is just a sign of an increasingly work-shy population, it just can’t be based on real need. How the rising demand for special educational support is more down to pushy parents than actual individual child need. How every pound spent on a child with specific educational needs is in some way depriving the vast majority of pupils much needed new books or teaching opportunities. That those benefits that are essential to so many people are in some way an extravagance, a waste of resources, unfair on hard working taxpayers.
This language then fuels so much which is wrong in our modern world. False information, bullying, victimisation, mistrust, division and hatred.
Is it really 2025, is this really positive change and new hope….
The view from the top of the modern art gallery, The Baltic. A converted old flour mill set next to the River Tyne, on this cloudless yet cold Saturday afternoon. Trying to forget the proceeding two hours, where my alleged football team successfully donated 3 points and way too many goals to a visiting, actual football team….
The Baltic is the Joseph Rank building…
I’ve been thinking about the support Hawklad has had from the Education and Health services. Lots of ups and downs, hopefully a few more ups…. In the UK it can be a bit of a postcode lottery. Some parts of the country offer more support, more joined up support than others. Our area is definitely in the OTHERS column. An area that has prided itself on highly streamlined services, so streamlined that a few too many services have disappeared completely in repeated budget cuts.
Fortunately a few services survived and have tried to help Hawklad. So thankful for those. But even for those services, what hasn’t helped is the constant change over in staff. The longest Hawklad had the same nominated support clinician was 18 months, often they would change at least twice a year. He’s had 7 different Paediatricians. As for his Education Support Officer, they have changed more frequently than managers at my so called football team… Over the last 3 years, this officer has changed 8 times. This week we phoned to talk about exam support and yes, the person has changed again. Every change brings delays and the need to bring the new person up to speed on Hawklad, who he is and his needs. Above all things, Hawklad has to try and build up a connection, time and time again. That’s so not easy for him. It really doesn’t help him. Some changes are unavoidable, people move on, that’s life but frequently, the change has been down to management decisions. Too often we’ve read or heard the following words ‘unfortunately he’s been taken off my case list so I’ve had to hand his files over to another professional, hopefully they will be in touch with you soon….’
Continuity, hard thought connections and openness based on trust are so important to successful support and therapy. Listen to Hawklad and he will talk about this way better than me. But here’s another thing. How often do the services listen to the kids they are trying to support. In our area, the answer is I suspect somewhere near, never. To my knowledge, he has never been asked. Maybe if they did they might start to understand better the importance of qualities such as Continuity in the services they are trying to provide.
You know it’s cold when you can step across ice and not hear a single crack or ice groan. Even having gingerly tottered halfway and inevitably hitting the ice with the force of a giant meteor about to wipe out the dinosaurs…. not the slightest ice indent.
Now filled with unbounded hope and belief in that ice, I visioned the perfect opportunity to excel in life once more….. I can do this. Sprint like a cheetah, build up vast amounts of momentum, jump on the snow sledge and majestically sail across the mighty ice lake. The first human ever to successfully sledge from East to West on this huge swath of lake ice (sounds way better than a big pond)… A cold Yorkshire hill, the theatre of dreams…..The beauty and grace of Swan Lake seamlessly combined with the power and agility of an elite sporting superhero.
Once again reality rips asunder unfounded hope….
A few moments later I’m stranded halfway, now face down in the ice and with the sledge riding on top of me. Going nowhere, unable to even get any purchase on my limbs to get up.
Spreadeagled on ice….. That’s probably a video title from the very top row section of Blockbusters….
It took me 5 minutes to find dry land again. It’s incredibly emasculating to be basically pushed by your sniggering son, helplessly across the ice like a curling stone….
York Minster and the surrounding streets after dark.
It’s hard to avoid the countless city ghost tours, apparently it’s one of Europes most haunted cities. Any city with this much history is inevitably going to be on that list I guess. It’s hard not to walk past one of these tours and not shout ‘he’s behind you’ or hum the ghostbusters theme. The actors doing these tours are super talented and I’m sure they are more than use to that kind of terrestrial intervention from muppets like me.
I love the city at this time. It’s almost quiet, peaceful with the heaving daytime crowds having largely ebbed away. You can almost hear yourself think, you can remember, reflect. Recall a world which is now gone, feeling like it’s rapidly receding in my rear view mirror.
Christmas can be the most wonderful of times but it can also be the most painful of times. Isolation rather than solitude. A life that is out of reach.
Tropical Scarborough on a blisteringly hot Autumn Day.
Forget the ice cream, hot soup was the order of the day.
Not sure if it was just the weather but when I offered to buy one of the brightly coloured beach hutches, Hawklad firmly declined…. The huts cost between about £70,000 to £160,000. You can rent them as well, Peak times set you back something like £300 for a week. For that you get a few kitchen items, a sink, deckchairs, use of the shared public toilets and free pet seagulls.
Peak includes Christmas, Wow that would be a brave call. Not sure the paper party hats would stay on too long with the inevitable Winter North Sea skin shredding sand blasting wind and icy horizontal rain.
Walking along the beach we passed a few groups of teenagers clearly starting the Half Term Break with some beach fun. I couldn’t help think about how Hawklad might view these scenes. It’s a part of teenage life that has so far eluded him, spending far too much time with his ancient relic of a Dad. Not sure those teenagers would spend too much time discussing beach huts…..
Living in the UK has many negatives, things like the weather, road potholes, useless Water Companies, Nigel Farage, Fuel Prices, Morris Dancing, late running trains, Brexit, did I mention the WEATHER. But then again we have some beautiful landscapes and CASTLES. Lots of Castles.
So when the clouds parted we headed off to one such castle. Helmsley Castle, over 900 years of history. It’s a wonderful adventure.
A Dad trying to cope with the loss of his Partner and becoming a single parent. 