Today I was planning to write about a squirrel. But at the last minute I’ve changed my mind. Maybe tomorrow…

The Guardian (one of the UK’s better newspapers) ran an article today about autism.

It’s upsetting’: the autistic music fans being shut out of gigs

Its a really interesting read and covers some really important issues facing those on the spectrum. If you have a spare couple of moments I encourage you to read it.

One thing the article is spot on about is that as you get older the support systems fall away and you seem to be left to sort yourself out. It’s so frustrating. You spend years fighting to get your kid diagnosed. If you succeed then you again fight to gain access to services. Hopefully you do get access and then suddenly your kids are getting to an age when the system decides to cut them adrift. It is just wrong.

The article got me thinking about our circumstances. Why does our son enjoy rock concerts yet often struggles in other crowded events. Having talked it though with our son I think we can almost answer that now

  • We only go to venues he knows and feels comfortable with. If we have to go to a new venue we go to see it in the daylight. If you speak really nice to the venue admin they will often accommodate a pre visit to allow you to acquaint yourself with its layout
  • He loves the drama, the noise, the lights. It’s a short fix of sensory overload on the same level as a scary rollercoaster ride. He controls it. If he’s not happy he knows that we can just get up and leave.
  • He loves the way you can wear whatever you want, do whatever you want to your hair, dance, sit, stand, sing, shout, drink, eat – yet no one seems to care. No pointing fingers. No funny looks. No questions. He feels like he can fit in there.
  • It’s so noisy. Too noisy to talk much. He is relaxed as he knows no stranger will talk to him. He still has an element of isolation.
  • He likes the thought that he is doing something which many of the other kids at school don’t do. It’s his hobby.
  • And finally let’s not forget that he just loves listening to Rock Music

Another point the article raised is whether you consider autism as a disability. Because of his diagnosis he is listed in the UK as disabled. Son hates that. He is clear – Autism is his personality not his disability. He does talk about dyslexia being his disability. His invisible disability. One which people see when they want to and ignore when he needs help.

Whether you want to call it a disability or not for me that’s up to personal circumstances. It’s called a spectrum for a reason. Everybody is different. It’s unlikely you will find two specific diagnoses which are the same. The article is right about access. It’s at best patchy and yes some simple changes can open up opportunities for more people on the spectrum. But it is difficult. We went to a Autism friendly hour which our local Toy-r-Us ran a few years ago. It was much more inviting and yet our son did point out that

“If they want to make this completely Autism friendly they should allow us to book slots so we get the shop to ourselves without anybody else here”

One final point. The article talked about earplugs. They are essential but please manufacturers, given my unfortunate incident with one, can we make them edible….

53 thoughts on “The squirrel needs to wait”

  2. Um, first I have to ask: edible ear plugs? Sounds like that would make for an interesting post. LOL

    In Ontario, Canada, the provincial government there decided in its dubious wisdom to cut programs for Autistic people. A good friend whose son is autistic was both enraged and thoroughly depressed by this development (or should I say lack of development). It is a battle that is going on right across the country. And it’s so worrisome.

    I haven’t read the article yet but I plan to. The Guardian publishes some really informative and awesome articles. And I agree with Hawk2017, dyslexia is the disability. Your son sounds like he possesses a lot of self-knowledge and that saying a lot in this world of lost and lonely people.

    Lastly I want to thank you for sharing the article and spreading awareness. None of us are cut from the same cloth – we are all unique individuals, including all people on the autism spectrum. Pulling for you, and your son.

    Liked by 2 people

    Reply

  3. I would agree that autism is not a disability though there are disabilities associated with it.
    I see similarities between challenges that people with autism face and people with brain injury. Both are in the category of being neurologically atypical.
    However, I would be into serious sensory overload within 15 seconds at a rock concert. Meanwhile another person in my brain injury support group would thrive at a rock concert- the louder the more she feels energized.
    Some of the reasons you list that makes your son enjoy the rock concert venue I can relate to (minus the music).

    Liked by 2 people

    Reply

  4. Edible ear plugs?? Do I even want to know? Going to concerts with my daughters is still something I and they love. I’m glad you guys get to enjoy that!
    It’s awesome that your son is so accepting of autism that he doesn’t consider it a disability. I’m thankful for the school Ben finally landed in (6th time’s the charm) because they keep students until age 22 and teach them life and job skills. Ben *is* disabled by autism and will probably always require some support. This school unfortunately is an exception, funded by a non-profit.
    Rock on!🎸🎶

    Liked by 3 people

    Reply

  6. I like the idea of edible ear plugs. Maybe they should be CBD laced? I think we can start a new industry, mon ami.

    I like what I read of your son, and your adventures with him. You’re doing more than my father and I ever did. * smile *. Your son certainly doesn’t come across as disabled in your tales, but as someone who’s eager to explore his existence, grits his teeth, takes some risks, and manages it, as you do. Truthfully, I admire you both.

    Cheers

    Liked by 3 people

    Reply

  8. It’s slightly off topic, although you alluded to the problem, but for a number of years I worked with a charity set up to provide sports projects for adults with ‘disabilities’ which was set up by someone who had worked for years at a special school, and who noticed that there were lots of things set up for school age children, but as soon as the kids turned 18 there was nothing.

    Liked by 3 people

    Reply

  9. 700,000 in the UK alone? Wonder what you could achieve if you all could co-ordinate against government/public misconceptions??

    I believe the figure here in Aus has been amended up to around one in 40 or 2.5% (500,000)
    Basically almost 1 kid in every classroom!

    Does your son prefer the same rock songs as with his DVD’s or is he able to deal with more variety of sounds and circumstances when he is immersed in a concert environment??

    From what i am learning in my reading (little to no direct personal experiences!) Autism and Aspergers are not so much of a dis-ability, as in the form of a physical body part/brain that is ‘damaged’, resulting in an in-ability to do things others see as ‘normal’, but it is more to do with a part(s) of our brain that has not been able to reach it’s regular level of development while the rest of the brain then does it’s best to compensate for this – the brain/mind can be of ‘normal’, or even above normal functioning, in almost every area, but becomes overworked trying to compensate for the underdeveloped region. This is not a matter of high or low intelligence but a matter of unconscious ‘control’. Some of the brain’s basic regulatory systems we all take for granted, and largely have little to no conscious control over, (which are largely, but not fully, formed before we learn to walk or speak) those with which we would normally use to control sensory input levels for example, or impulse control are likely insufficiently developed in those people on the spectrum and their functions are being taken over by other areas of the brain that are not normally used to do the tasks. (And so the other areas of the brain need to work harder, using more energy resulting in constant tiredness or low energy. It could also cause hyperactivity on some).

    Evidence would seem to suggest that as long as there is not massive damage to the brain that the under-developed region(s) can be encouraged to recover their normal level of function with the appropriate stimulation of the brain centres, Some of the methods being used to stimulate brain growth include sound (music/mother’s voice), light (laser and infra-red LED treatment) and even bodily movement (Dance or physical/occupational therapy).

    Many who have had these professionally-applied treatments go on to progress to be of above average intelligence and ability. (Possibly because of how hard their brains have had to work previously to ‘get by’ in a world where ‘normality’ is rewarded and being different is largely punished).

    Liked by 1 person

    Reply

    1. Yes the same rock songs.

      Unfortunately Dyslexia is automatically associated with low attainment to frequently in Education here. A clinical psychologist said the same. She sent a series of test scores into Education. The reading ones were 2 or 3 years behind age. But the other scores were above age group and two hit the highest age group banding available for the tests. She argued that school should modify the teaching programme, and if they did he would fly. Education sent the report back saying it was something they don’t consider and put him in the bottom set.

      Liked by 2 people

      Reply

      3. The money is definitely there – it’s just a matter of them deciding where it gets allocated so as to give the government the best benefit, not the Community.

        The figures seem to be saying this is a growing concern – with organisation, Autism and Dyslexia could soon have a greater influence on their allocation of funds!

        Like

  10. It’s horrible to be pigeonholed as disabled. You are what you are. Okay, you may be different, you may not be able to do the same things in the same way as ‘normal’ people. But in my book that’s okay. Work within your limitations but at the same time accept as much help as might be available.

    Liked by 3 people

    Reply

  11. The Guardian article was enlightening and your conversation with your son more so. I have wondered how it can be that he manages those concerts.
    Your final paragraph reminds me of cheese roll. When I wore the old hard contact lenses I would sometimes need to take them out and would lodge them on one of my gums. One day I was given a cheese roll. After a bite or two I found half a lens.

    Liked by 2 people

    Reply

  12. Spot on post. Yes, ‘Spectrum’ is a good word… I think we are all on a spectrum. After all, it is not usually ‘Autistic’ people who spew hate and go on killing sprees. Those ‘hateful’ people are much more disabled than the rest of us. But yes, ‘Dyslexia,’ is a disability to write flowing words. I think though, that this particular disability also sharpens the ability to be succinct, to find the relevant information quickly and to say things quickly.

    I might write a long prose about a beautiful day. A dyslexic person would say, ‘It’s a beautiful day! and that says it all. Dyslexics think fast and move on. When they read, they speed read, skipping over stuff and just getting the bullet form stuff. They just don’t get all the flowery bits that we add on.

    I would suggest that you don’t eat any more earphone buds… They are unlikely to make ear phone buds edible, as buzzing insects will be attracted to come and sample them. It won’t make for a great listening experience! 😂❤️

    Liked by 2 people

    Reply

  13. This week Declan is attending a vacation bible school at church. When I drop him off the band is playing – really loud – so loud I brought his headphones. Yesterday after I dropped him off to his 1/1 aid I saw they moved all the kids to the stage. I was surprised when I finally found him on the stairs of the stage, headphones off and he was dancing to the music. That is the closest he has come to a concert but reading about your son at concerts makes me wonder if Declan will be the same!

    Liked by 3 people

    Reply

      1. Yes – I was prepared for the morning battles and even prepared bargaining with him that if he went he could get a toy at the end of the week. I never needed to bring up the toy. And it’s all day – 9-3:30 and the long day doesn’t bother him. So surprising.

        Liked by 1 person

  15. I love your breakdown of your son’s love of concerts. It all fits super perfectly; then on the flip side, Biff and Bash’s sensory issues come from the aural input more than anything else, so concerts would be TOTALLY out of the question for them. You’re showing that with a little preparation and your kid’s input, you can make an experience like a concert totally work. Be proud of yourself, Friend! xxxxxx

    Liked by 1 person

    Reply
  16. Pingback: The squirrel needs to wait – A Dad trying to cope with the loss of his Partner and becoming a single parent. – International Badass Activists

Leave a comment