Autism Awareness, My Socially Awkward Life

Fuck Off Autism!

Fuck Off Autism!

Yeah, ya Bastard, why don’t you right royally fuck off! Believe me, I don’t say that lightly. Even my boys say it too! It’s not the diagnosis but the label that comes with it. They don’t want sympathy. Most of all and above all else they just want people to see them as normal. Which to me they are. They are my funny, infuriating, loving, giant pains in the ass just like every teenage kid. Can you imagine having to have a quiet word with staff where ever you go just to be on the safe side? Or what it’s like when college takes your child off role or sends them home because hey, they don’t matter? How about the whole debate on low functioning versus high functioning? Which are you? Do you fit into a category? Well why should they? Excuse the rant but fuck off autism!

 

It’s not the autism itself but the stupid preconceived ideas and institutions that make our socially awkward lives so much harder than they should be. Walk a day in my shoes mate! You might have a change of heart. To quote a friend (I do hope she reads this) ‘If you put a group of special needs mums into government we could literally sort pretty much any problem they threw at us….. And if we couldn’t sort it we’d be bloody good at negotiating through it”. You see, we have learnt infinite patience, negotiating skills, an understanding of medication and how it works and most crucially over the years we learn the law and how it protects our children. And believe me, we need it! The unseen disability that currently affects 120,000 children of school age and that number is growing are suffering from institutional discrimination!

 

High Functioning Versus Low Functioning Autism

 

Firstly let’s take a look at this high functioning versus low functioning metaphor. Does that mean that every one of the 700 000 people currently have an autism diagnosis in the UK are either a savant or dribbling in a corner? What about the people in the middle which is where the vast majority of people on the spectrum sit? If we ask the 2.8 million people in the UK that have a relative with autism they will say the same. That just like you and me every person on the spectrum is different. Show me one autistic person and that’s it, you’ve met one. Not all of them! Then there’s the whole, oh, what’s their special gift?’. Mate it’s not a re run of Rain Man! Do you have a special gift?

 

In this world where everywhere seems to have a Diversity Policy in not one I’ve read is there a mention of Neurodiversity. We are to embrace each other whatever our creed, colour or sexual orientation which I whole heartedly applaud. But we’ve unknowingly created a loop hole. We’re missing that everyone’s brains are different too. Those of us not on the spectrum are called Neurotypical. We’re all different but the wiring in our brains is more or less the same. It’s just the same in autism only the wiring is just slightly different. And our so called Diversity Policies do not take this into consideration. They want the autistic brain to conform to the so called norm. And as a result we have a society that expects square pegs to fit into round holes.

 

In my humble opinion at some point in the not too distant future there’s going to be a huge crisis in schools because they’re just not gearing up to cope with autism. And we’re not just taking about education either. Social Services will also become over stretched as will Mental Health Services. Compare the 17% exclusion rate from school for children on the spectrum with only 1.4% for Neurotypical children. 70% of adults on the spectrum say they are not getting the social care they need. And according to the National Autistic Society only 16% of adults on the spectrum are in full time paid work! And 40% have symptoms of an anxiety disorder at any one time whereas in the general population that number is 15%. Now that’s some scary statistics!

 

Education And Autism

 

Take education, I’ve lost count of the number of exclusions my boys received. Normally as a result of a meltdown. My youngest son stayed in some sort of halfway house provision for almost a year because there were no places available for him in a specialist provision. I can’t even begin to tell you how many times we’ve actually lost both my sons when they’ve fled school. Or the amount of times they’ve almost been run over because of it. One once chose to walk home along a dual carriageway! Even now when they’re at college it’s still happening. My youngest’s college called security when he had a meltdown. We lost him for four hours. Can you imagine what that feels like?

 

Does their Diversity Policy protect him? One would hope so, but no. Instead he has to go to a disciplinary hearing about his behaviour. Now a meltdown is not pretty nor enjoyable by any means. For either the person having it or the person watching it. So why would you punish someone for something they have no control over. Do they really think that someone on the spectrum puts themselves through a meltdown intentionally? By this point my son never wants to go back there anyway. In their infinite wisdom they cancelled the disciplinary hearing and instead decide to hold an EHCP review.

 

Now this all seems quite reasonable at first glance. But to me, the parent! I’m thinking but my child was only with you for two weeks so you hardly know him. How on earth are you going to be able to contribute to and amend details on such an important document without knowing him? So on a Friday morning I call them to express these concerns. ”Oh, absolutely Mrs RFW, we totally agree, I’ll investigate this and get back to you this afternoon”. Guess what? yep, you got it, no call back. Oh, my goodness though, boy it get’s better. Please do carry on reading.

 

So Saturday arrives and with it the postman. Why does mail that makes you angry always arrive on a Saturday morning so you end up stewing in your own anger for a whole weekend? I suppose it’s for the same reason that toast always hits the floor butter down. Anyway, I open it to find the EHCP review is cancelled. Great I smugly think to myself triumphantly, Rachel: one, college nil! Oh but that moment of glory was soon to be dashed. I unfortunately read on. The letter goes on to say that the reason for cancelling the review is that my son is no longer on role with them!

 

Like How? No letter, no warning! Just run away from a situation as fast as you can. Don’t look back and just hope that you get away with it. This, I’m afraid is not unusual. My point is the very act of sending that letter was breaking the law. Mainstream schools are causing families all over the country stress on top of the stresses they already have. They are doing it blatantly and relying on the families they pick on not to have the energy or the knowledge to fight back. The irony of the whole story is that one, they did a complete turn around on the Monday and the meeting is now going ahead again. And two, the next day the postman delivered a letter of invitation to parents evening! Apparently for a child that was no longer enrolled there. I kid you not!

 

Social Care and Autism

 

Social Care is stretched to its utmost limits. As a parent of small children it can be difficult to gain access to any kind of services. But when you get to adulthood it becomes even harder. You see you have to move from children’s services to adult services. My middle son is 18 in November, his referral the Adult Mental Health Team in July, to date he has not been picked up by them. The whole point of Adult Services from an autism perspective is to support independent living.

 

Independent living is not something parents of ‘normal’ children have to think about much. But as parent’s of children with disabilities and special needs there comes a point where we start to think about our own mortality. And with that comes the question of who will look after your children once you are no longer here. It’s often the case that siblings take over the care of their brothers and/or sisters meaning they become a carer and as a result they often don’t reach their own potential in life.

 

Once again, if we could access Social Care in the early days and teach life skills from day dot surely it would reduce the load on an overstretched system in the longer term. As it is, at this moment in time, if things don’t improve dramatically I suspect my middle son will need support until his dying day. At the moment he leaves the house very rarely. In fact there are a growing number of autistic people who are house bound. How will he cope without the support in the future when I’m no longer here for him?

 

Mental Health In Autism

 

Both  of my children are receiving treatment from CAMHS (Child and Adolescent Mental Health Services) another over stretched service provider. As I mentioned earlier the rate of diagnosis for anxiety disorders is far higher in autism when you compare it with the wider community. One of my boys has a diagnosis of autism with a PDA (Pathological Demand Avoidance) profile. Now to make matters even more confusing the strategies that work for autism do not work for PDA. In fact there is little to no research on PDA in adulthood let alone from a mental health aspect.

 

Waiting lists for CAMHS are very long and when you do finally manage to get your assessment it’s often not autism friendly. The questions are designed for a neurotypical brain. I suppose my biggest question is if the the autistic brain is wired up differently how on earth can standard mental health care help?

 

One of my sons has an OCD diagnosis and the answers he gave at his first CAMHS assessment really struck a cord with me. He struggles with closing doors for instance and will keep closing one until he’s happy it’s shut. Now in a neurotypical brain the reason for this could be something as scary as the person thinks their parent will die if the don’t make sure to close it. In the autistic brain the reason is much more logical. If my son doesn’t close the door the dog could escape and something might happen to him.

 

And as far as I’m aware no research has been carried out on how the drugs and medication offered work on the autistic brain. Surely if the brain works differently then the effect is different too. More importantly, why is there no research? Again, if we offer support and understanding to those on the spectrum from an early age work can begin to help develop coping strategies. Life long strategies to encourage mental well being which in turn will lead to more fulfilling lives. Not just for the person with the diagnosis but for the 2.8 million people who are related to them too.

 

A Way Forwards For Education, Social And Mental Health Care in Autism

 

If you’ve made it this far I want to say thank you to you from the bottom of my heart for reading all the way to the end. I know it’s not interiors related and I know it’s not something of interest to everyone. But my point is this. Services for autism are currently akin to putting a sticking plaster on an amputated limb! Not only does it affect people on the spectrum but the knock on effect is that it will affect all of us eventually. So why can’t someone up at the top see that the whole thing needs turning upside down? We need to start supporting those on the spectrum from the earliest point in their lives as possible. Not when the problem has become so huge that the best you can hope for is the treat the symptoms and not the cause.

 

We need to change how education, social and metal health care works. It’s fundamentally a broken system for children on the spectrum. It should be giving confidence and creating mental well being from as early in a child’s development as possible. Not taking it away! Just think about it for a moment. If we fix the foundations the tower may not collapse in the end. In fact there’s a significant minority in this country that might, with a pinch of salt and a sprinkling of good luck finally start to flourish. Perhaps it’s not a case of Fuck Off autism, more a case of helping those on the spectrum to have happy and fulfilling lives.

 

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12 Comments

  • Reply Sarah November 12, 2018 at 2:40 pm

    What an amazing and informative read. Well done for saying what needs to be said.

    • Reply Rachel Edmonds November 12, 2018 at 3:16 pm

      Thank you so much, that’s so kind of you to leave a comment and such a positive one too.

  • Reply Joanne November 14, 2018 at 6:51 pm

    Wow! I loved reading your first post Racheal, what a great insight you have xxx

    • Reply Rachel Edmonds November 15, 2018 at 7:19 am

      Thank you Joanne, I’m passionate that things have to change, we all want it to and yet no one is listening to the ever growing number of small voices all saying the same thing.

  • Reply Jill Catrinel November 14, 2018 at 6:59 pm

    Thank you for sharing this, Rach. I absolutely agree there’s a tremendous lack of education and resources surrounding autistic and neurotypical individuals. I don’t personally have experience with this, only through friends, and my husband’s step-mom who works in this field and has a line of children’s books inclusive to autism, and have heard how frustrating it can be outside of home. I really hope the hope the rest of the world steps up and creates a better system.

    • Reply Rachel Edmonds November 15, 2018 at 7:28 am

      Thank you for taking the time to leave such a thoughtful comment. In the long run by giving help and support earlier governments would save a fortune and there would be less strain on other services too.

  • Reply Kat November 14, 2018 at 9:01 pm

    Wow Rachel , what an education that blog was, and what an inspiration you are. Your family must be so proud of you. Well done you for saying it how it is !

    • Reply Rachel Edmonds November 15, 2018 at 7:32 am

      Thank you so much, it’s something I feel so passionate about and have wanted to say out loud for a very, very, long time.

  • Reply Lucy January 24, 2019 at 11:20 pm

    Thanks so much for this post x

    • Reply Rachel Edmonds January 25, 2019 at 12:11 pm

      You’re welcome, I’m so glad you enjoyed it x

  • Reply Susan July 7, 2019 at 2:22 pm

    My daughter is 57, living in a “Supported Living” home. She is Autistic, Epeleptic and has severe learning disabilities. She lived at home until she was 37 then I was persuaded she would be better away from us and would become more independent- what a joke! She thought she was on respite for the first year and had lovely staff. We visit every week, but gradually staff changed, management changed, funding was cut and her confidence ebbed away. The day we found her covered in bruises we knew we had to take action. Social Services then found another home for her where most of her savings disappeared and we realised she was very unhappy. Yet another move – so bad for someone with Autism – this time things were better for a while. Just as well as husband had suffered 4 heart attacks and then diagnosed with Prostate cancer! 10 years on, husband has COPD and incurable Merkel Cell cancer. I had a stroke last year, which has messed with my sight so not allowed to drive yet. Still I battle for my daughter who has lost nearly all of her skills now. More cuts in care, change of Care Providers who are cheaper, less proper care. The worry never goes so between hospital visits with husband, meetings with Social Services, Meetings with Care Providers and sometimes a trip to hospital to try and sort out my eyes I try and keep up with the housework and garden and try to keep sane! I used to go dancing, to the gym, but no time for any of that now. Goodness only knows what happens to my daughter if I crack!

    • Reply Rachel Edmonds July 8, 2019 at 9:21 am

      Hi Susan, I am lost for words, I am so sorry that you are going through such a harrowing time and not getting the support you need. And I know that feeling of knowing you are teetering on the edge mentally too, yet also knowing you can’t afford to give in to it. You must be absolutely exhausted, not only mentally, but physically too. I wish I could wave a magic wand for you. The only thing that I can offer is to try to make some you time. Even if it’s only an hour a week to do something that you love. A wise person said to me many years ago that to take care of others you need to take care of you too. I dearly wish that help arrives in the right form for your daughter and I’m sending you a hug from one autism mum to another. Not much help I know, you sound an amazing woman with a strength and determination I can only dream of x

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