Autism, Sensory Processing Disorder and Why I feel Safer on a Psychiatric Ward than in My Own Home

Imagine having one doctor for every five people in a community.

Imagine living in a community

Imagine having to wait minutes to hours, maximum, to get check ups, medication or just some professional medical advice or reassurance.

Imagine having a ‘black dog’ day, but having someone check up on you hourly, someone else cook your meals or provide you with vitamins when you simply can’t face eating.

Imagine getting something to ‘take the edge off’ while you lay catatonic.
Now imagine losing it all in one go.
Imagine the loneliness.

Psychiatric wards can be noisy places. The other patients can be scary; you spend thirty years trying to learn what ‘normal’ is then all of a sudden you’re not in Kansas anymore.

I’ve been in Oz for five months now, and I’ve no intention of clicking my heels. Just the thought of going back to my home sends me into a panic attack.

My flat is quieter, full of comforts, my collection of ‘special interest paraphernalia . But I can’t go back there. I prefer it here, with the slamming and shouting. Here I feel safer.

Once upon a time I was a teacher. I taught autistic children. I didn’t know I was autistic until then.
For some people the realisation is empowering. For me, it made me feel like that sense I always had, that I was special, was really just me refusing to face the fact I had special needs… so I had a breakdown. I couldn’t accept myself the way I accepted everyone else with autism. My autism wasn’t a difference; in my mind it was a failure.

Five years on from my diagnosis, which I had to struggle two years to obtain, here I am in a mental health ward, trying to differentiate between what is neurological difference, and acceptable, and what is mental illness developed (I believe) due to late diagnosis.

Diagnosis empowered me legally but it disabled me emotionally. My anxiety became perpetual. Every interaction with a person is social and my social brain doesn’t work like most people’s. It’s not ‘normal’.

I’m terrified of being discharged.
I dream of a world where doctors and nurses make up ninety percent of the work force and healthcare is valued over stoicism; keep calm if you can but get help when you need it.

I’m one of the lucky ones too.

Diagnosis helped me get support, helped me get a home and the chance to go to a rehabilitation centre where I hope to learn how to function socially, something I missed out on at school, where I knew I was different and, like so many others, I spent as much of my time bunking off, sleeping through lessons or just taking drugs to get by.

Surviving my ward experience has been a battle I never thought I could face. It has been hard. I have become overloaded so many times; I’ve beaten my face to a pulp and split my head open over and over again. But I don’t want to go. The security of being surrounded by healthcare experts is too comforting.

We NEED more.

We have some many people and so few doctors and nurses by comparison. They should be lauded as heroes but instead the government keeps cutting their funding and making it so other people won’t get as lucky as me. They are effectively euthanizing autistic people through ineffective diagnosis.
There is no harm in assessing someone , and parents need go realise this too, if your kid isn’t autistic they won’t get diagnosed; if they are they need to be.

I have no solutions to offer, just this ramble of thoughts but, hopefully, in the future, once I have been rehabilitated, and deinstitutionalised, I will.

For now all I can say is if you think you’re autistic, you probably are, and fight for your right to be diagnosed.

And then become a doctor.

Advertisements

34 thoughts on “Autism, Sensory Processing Disorder and Why I feel Safer on a Psychiatric Ward than in My Own Home

  1. I hope that we get better at “finding” the persons who are autistic earlier. In my last job I was part of a team making diagnosis on complicated cases were autism och adhd was suspected. We only worked with grown-ups. So much suffering that could have been stopped. In many cases the cases were complicated due to not have been found as kids. Anxiety, depression, self-harm, drug use, alcoholism, flunking out of school, the list goes on.
    As a “bonus” working there I realised that I myself had ADD/ADHD. So much unnecessary anxiety due to not being able to focus on my job…

    Oh and thanks for the like on my short story, meant a lot.

    Liked by 2 people

    1. I agree, a lot of problems come from late diagnosis.

      Which story was it by the way I’m not sure it was on the blog you’ve commented with was it? I read a lot in the morning but I only speak English so I assume you have another? Let me know.

      Like

      1. Ah, I’m guessing WordPress linked to a random one of my blogs. It was the story “I am attack helicopter” on my blog “ordlavin”.

        Liked by 1 person

  2. Very, raw, moving, powerful, beautifully written piece with each and every word carrying a meaning.
    I was one of the luckier ones, and can’t imagine what it would be like if I were diagnosed with autism at 20 years instead of two. And my own short stories need a bit of work 🙂

    Liked by 2 people

  3. Very compelling and powerful and well written. It’s hard to imagine what you are going through. I have anxiety issues that shut me down for a lot of my life and went untreated and never felt normal, so I have some small inkling of what you’re going through. As much as the being surrounded by health care experts would appeal, I don’t know if I could adapt to other patients. Take care of yourself, Jack. I wish you the best.

    Liked by 1 person

    1. It is hard I made so many friends in the first few months and now I just try and stay away from everyone. I have said to a few people it’s just that I’ve been there so long now I can’t handle getting to know anyone anymore just to watch them leave whilst I stay on and on even when the psychiatrist says I don’t belong there, there just isn’t anywhere else to go yet. I’m just waifing.

      Liked by 1 person

  4. “Diagnosis helped me get support, helped me get a home and the chance to go to a rehabilitation centre where I hope to learn how to function socially”
    – i felt the same way about going to rebab.
    very empowering story.

    Liked by 1 person

    1. If you don’t mind me asking did it really help? I’m worried it’s my last chance and the wait is terrible. I’m top of a list but who knows what that means in terms of time?

      Like

    1. Oh it’s pretty bad but the other choice is constant panic attacks. This is the only way to get daily anxiety medication. The rehab will be better but no idea now when that’s going to happen it’s gone way past the waiting time they have initially. I’m sorry for you though, I hope things are better now.

      Like

  5. Its time for people to be pro autism. Not just accept it as “difference” but embrace it as a positive “difference”.
    Children of pushy parents are put on TV to show off their exceptional skills.. nearly all of them want to their kids to be Einstein and yet nearly all of them would have considered the young Einstein to be a problem child, he was more likely to be on the disruptive child TV programme. He was most likely autistic.

    Liked by 1 person

  6. Praying for you! Quite frankly, knowing that in the end God lets me win, no matter what, is the only thing that keeps me from completely falling apart most moments. Praying that He becomes your drug, too! Oh, and that if He plans to have you continue using meds of some sort, that you get what you need, when you need it, no worries!
    First realizing that I had autism was a little weird, but since I have a son with autism, that has given me a way to positively use my weirdness everyday, helping him with what I have learned the hard way. But sometimes I cry because I wished I could just fit in. Then I learn that even “normal” people feel that way, so it is part of being human. Only God always gets us.
    Thanks for sharing about the ward. I have not yet had to go, but there have been moments I wondered if I would need to, and I wonder about that for my son, sometimes. He is doing well, but when he leaves home, I wonder how it will go. I pray a lot!

    Like

    1. I’ve tried praying.

      Problem is who do you pray to?

      There’s no clear choice in my opinion. And when I get down to the specifics I wonder what I’m praying for? Forgiveness? Is that just to avoid hell? Am I debasing myself before a wrathful God to avoid an eternity of pain? If so can he truly give me what I want? If death isn’t final then what’s next? Even an eternity in heaven sounds boring and watching the world suffer and die while I rest in the arms of angels sounds like a different kind of hell than fire and brimstone, but it still sounds like hell nonetheless.

      I wish I could find a reason to be comforted by the notion of God but in truth he just frightens me.

      Like

  7. Thanks for sharing. You’re certainly brave, braver than those who pretend they don’t have a special need or a mental illness. I am praying to God in Jesus’s name for your wholeness so you can be that doctor and help many others. The God who loves us all and doesn’t want any of us to perish desires for all to have abundant lives on earth. Furthermore, we all need help in life and I’ve found that even when you accept Jesus as savior and Lord, you still need the right people to pick you up when you fall or when life seems too hard. We’ll always need support from other – in an institution or not – that’s how we’re made.
    You are courageous enough to get yours. Keep healing and, please, keep writing.

    Like

  8. A very open write on the struggles of those who suffer with illnesses no one wants to see last they find a pinch of what they see in them. I believe we all have something were afraid to face. Thank you for sharing your thoughts and experiences.
    Isador a 😎

    Liked by 1 person

      1. Amen to caring 🙏🏻 Mental illness, depression, suidcide, aspergers, chronic ADHD are conditions that run in my family. I have a huge understanding of the pain of those who suffer from having illnesses that people don’t want to see. May your journey back be a smooth and peaceful one. 😎

        Liked by 1 person

  9. Your writing is so honest, real and raw, so articulate too. Thank you for sharing your experiences. I have an autistic son, had to fight to get him diagnosed (he had brain injury die to lack of oxygen at birth and the docs wanted to call it developmental delay but it was obvious he was autistic from age 2). The diagnosis helps with getting support and explaining to others, the world doesn’t always understand my son! I hope he finds his voice to tell the world, like you are.

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s