Curing Autism

    

Can we talk about a cure?

There’s a real problem when it comes to Autism, and it’s not to be found in us autistics. It’s to be found in the focus of funding.

Time and time again I see people struggling to get diagnosed, and then struggling when there is so little real support post-diagnosis.

The vast majority of funding appears to be spent on finding a cause for Autism, and studying what it really means neurologically.

I’m not saying those things shouldn’t be funded, but that leaves a tiny percent left for actually supporting people.

I’ve recently seen a disturbing comment by a parent of an autistic child, berating an autistic adult for calling themselves autistic, “You wouldn’t call a child with cancer a cancer child!” is the argument.

I wonder if they know how hurtful and offensive that is? I wonder if they realise that they’re comparing a life destroying illness with a brain process. My brain process. My autism isn’t a cancer on my soul. It’s a profound part of who I am. It’s the way I see the world.

If you take away cancer, that is a good thing. If you take away my autism, who am I? Because I can guarantee that I would not be me.

Taking the cancer analogy further, if all terminal cancer patients were treated like autistic people, there would be an outcry. “I’m terribly sorry about the symptoms and the pain, but we cannot provide you with pain relief, counselling or practical supports or anything that might help slow your decline, since we’ve focused all the funding on finding a cure. Isn’t that great?”

But I don’t want a cure. I want support for the negative symptoms that my autism causes. I want education for society in what being autistic means. 

Essentially I want to be the happiest version of me possible.

When you talk about curing me, not curing my negative symptoms, you are talking about exterminating who I am. You are talking about taking away the way I connect to the world. My fascination, my obsession, my joy.

When I say dealing with negative symptoms, I mean those that actually harm the autistic person or those around them. I don’t mean training a child not to do a harmless stim because it looks weird. 

If we admit that ABA (Applied Behavioural Analysis) works to change behaviour, but in the same breath say that it’s the autistic child that must be forced to behave normally, then we’re missing a trick. Why squash the autistic child? Why force them into behaving in ways that will cause them exhaustion and harm? Why not turn it out onto the rest of society? Force acceptance? 

If you think the idea of forcing acceptance on society is appalling, but forcing acceptance on an autistic child is for their own good, then perhaps you need to re-examine your thought processes. 

I needed help getting diagnosis. There wasn’t any help and it took 18 months to get my first appointment. There’s no funding.

I need help dealing with sensory overload. There isn’t any help for me. There’s no funding.

I need help dealing with my anxiety at times. There isn’t any help for me. There’s no funding.

It’s just not there. It should be.

Autism is not cancer. Autism is not the enemy. Autism is a normal neurological variance. Just like being left handed. We need the right scissors, or rather the left ones. 

We need alternative methods of communication. We need understanding. We need to be treated with respect.

We are an integral part of this world. There are millions of us. It’s time acceptance meant just that. Accepting that we are here now we’ve been noticed. Accepting that it’s ok to change things for the minority when it won’t be a negative change for the majority.

Accepting that some of us want to be called autistic, and not “with autism”, just like we want to be called left-handed, and not “with a sinister preference”.

When you correct the way I describe myself, you are using language in such a way that suggests autism is stigmatising. 

I am Rhi. I have blonde hair. I have children. I have a husband. I have autism. I have a passion for writing. 

I am Rhi. I’m blonde, I’m a mother and a wife, I’m autistic and I’m a writer.

Both are fine. Telling someone they should use one over the other is not fine. It means you’ve decided certain terminology is negative, and instead of fighting that negativity, you’re accepting it.

It’s time we saw Autism as normal. It’s not a fad. It’s not fashionable. It just is. It’s time to accept what is, and work on making the world a better place. The time has come.

60 thoughts on “Curing Autism

  1. Reblogged this on The Misadventures of Mama Pineapple and commented:
    “It’s time to accept what is, and work on making the world a better place. The time has come.”

    I can’t begin to express how important, and true, the messages are in this post. In a world where my daughter and I face a year – or longer – of waiting for diagnosis, then the prospect of very little post-diagnosis support, and where, in other countries, the ability to get assessed is based on the ability to pay, something needs to change. We are here. We are valid, and we need support to be, as Rhi puts it, “the happiest versions of ourselves.” The funding needs a refocus.

    Liked by 3 people

    1. My father was too. Trying to fit people into one mould even though it’s restricting that individual is never a good idea.

      I hope one day autism will be seen as boring and normal.

      Liked by 2 people

  2. Thank You Rhi. I will be reading this article to my best friend of 10 years Matthew, tonight. Matt is 41 in December, Full Spectrum Autistic, Non Verbal.
    Matt now has more friends than me, it took about 5 years for Matt to be accepted in the Community where we live, and that doesn’t include everyone, still lots of adults and children need education in this arena.
    Hopefully you will find the time to read my comments above.
    I will now go check out your Blog 🙂

    Liked by 1 person

    1. You are very welcome. I hope Matt enjoys it. It always amazes me how much “acceptance” is expected by autistic people towards everyone else, and how little is often volunteered back to the autistic person.

      The more people know, the more it’s accepted that we’re all just normal, the better.

      Than you for taking the time to comment. I really appreciate it.
      Rhi

      Liked by 1 person

      1. Hi Rhi, thanks for your comments, I pasted my Facebook comment below, it’s in response to comments by the Guys mentioned. The Facebook page was posted by Richard Strong.
        I hope that you and your family have a great weekend

        My Best Friend Matt , who I have known for a decade, is Full Spectrum Autistic, Non Verbal, along with a couple of other diagnosis.
        I have watched him go from extreme self abuse, he used to have to wear a rugby helmet and be restrained to No Helmet last three and a half years, and little to No Restraints as I write this.
        From living in a Residential Facility, going to a Day Program, both of which Matt detested, to eight years ago moving into his Own house, now next door to his mother and across the street from me, and Matts Day Program with 24/7 Staff. I have a list of other positive things that Matt now does, that he didn’t do when I first met him. He will be 41 in December.
        One of my daily Prayers is for Healing for Matt, I have watched this transpire in small increments. He used to type under the guise of Facilitated Communication, stopped over 20 years ago.
        He now has a Dynavox Tablet and I am working with him to try and get Matt to communicate again.
        My Point is, Matt is who he is and if a cure was now available for him ,Matt Would Not be Matt. It would be a Different Matt, not good for Matt or the people close to him.
        Laurence Mitchell , I sent you a friend request , your story is inspiring and I’m looking forward to seeing your YouTube in November, by the way I love Poole 🙂
        Peter Butler I have sent you a friend request also, I would love to know your story 🙂 , by the way I used to live in Catford late 70’s through end of 87. I was a Cop in the Met, I arrested Malcolm Sargeant, Trooping of The Colour 1981.
        A Yorkshireman now living in Redding California.
        I look forward to hopefully hearing from you both.

        Liked by 2 people

        1. Thank you for sharing this.

          “Matt would not be Matt” that’s the crux of it all. Matt sounds brilliant, he sounds like he is much appreciated for being Matt, he has friends because he is Matt.

          If he was cured he would be somebody else.

          If I was cured, I wouldn’t be Rhi.

          It’s not about pretending there aren’t difficult parts of being autistic. But neurotypical people have difficult parts too, and no one talks about turning them into someone else because of it.

          Matt will stay Matt. I will stay Rhi. And the world will be so much better for having us in it, just the way we are.

          I can’t thank you enough. Just lovely.

          Liked by 2 people

    1. I’m happy to answer any questions if you’d like me to 🙂

      It’s a tricky one, terminology. It is important, but it’s often important for different reasons to the ones being claimed.

      The power of words. Earlier today my daughter told me she hated anchovies. “That’s fine, I said. I’ve only got tiny-fishy-lovelies.”

      Turns out she really likes tiny-fishy-lovelies 😄

      Ok. That’s a silly example.

      But for all the arguments online, the important thing is what the person wants to be called. I prefer autistic. I know other people who prefer “with autism”. If I called them autistic i’d be disregarding their ownership of their diagnosis.

      The only thing I can guarantee is that if you call autism an illness or a sickness or anything like that, it will hurt people.

      I don’t know if that answers any of your questions. I’m positive my answer contained too many anchovies either way!

      Liked by 1 person

      1. Thanks for replying . They told us he was mild-moderate ASD, and that it would have once been called Aspergers. What I’m wondering is if the combining of all the different terms into the catch all Autism Spectrum Disorder has done little to improve general understanding of the condition. I tell people my son has autism and they say ‘oh it must be very mild ‘ – it’s not mild at all to us but because he is ‘high functioning ‘ people don’t see the problems he has . Sorry for the waffle !

        Liked by 2 people

        1. No, please waffle away! You might want to read my article on the problems with “high functioning” as a term https://autnot.wordpress.com/2016/06/06/the-highs-and-lows-of-functionality/

          The problem is that when people think of autism, they think of a set of behaviours. If he’s not doing them then he must be fine.

          But autism isn’t a behaviour. It’s a difference in processing. The behaviours are symptoms. Stims and things are important, but we learn not to do them because it’s “weird”.

          This year is my first year of stimming as and when I need to. It’s made such a difference to my stress levels.

          Also check out the blog post “Autscriptic”. It’s an amalgamation of responses to “you don’t look autistic”.

          As many experts say, you can have a very happy “low functioning” autistic, and a very unhappy, stressed and miserable “high functioning” autistic. The terms are misleading and unhelpful.

          Educating people can be really difficult. They often try to reassure you by saying “he seems fine!” When you as a mother know that he will be exhausted later.

          Having an understanding parent is a huge advantage. Having somewhere to be you. Having somewhere safe and people who will say it as it is. All these things are incredibly important. He’s already got that in you.

          Liked by 2 people

          1. I will check those out – thank you for your patience ! I have to say the community I have discovered online has been brilliant, so supportive and understanding. I just want to do my best for my boy and ensure he gets what he needs to make school as stress free as possible for him.

            Liked by 2 people

            1. Any questions just throw them over. The autistic community is amazing (and by that I mean the people who are autistic, but only since I’m not in the parents’ community), so kind and caring and willing to offer their time to support others.

              Actually you should definitely check out autisticmotherland.com she’s an autistic mother of autistic children and has incredible insight. Really good blog.

              Liked by 1 person

  3. I asked my 14 year old son to read this so we could discuss his views. I asked him how he would prefer people to speak of him. His response was “I just want to be called and referred to as Xander”. God I love him. Thank you for the article.

    Liked by 1 person

  4. Probably going to get flamed for this but it is a subject I’ve put several years worth of self directed research into and I feel I must share. I am autistic, I struggle with social and loud environments, I misread people all the time and I am socially inept (all of which I now know is completely down to sensory overload). I am one of the lucky few who has high functioning autism, I currently freelance as a consultant in 3 different industries – everything I know is self taught as I hated school and failed at higher education but have a natural ability to learn and retain new skills with minimal effort. I totally agree that acceptance must come first but that should not lead to ignorance to the fact that autism is on the rise (not just in terms of diagnosis of aspie/high functioning autism, but in the occurrence of severely debilitating autism such as non-verbal/seizures as well as the spectrum of co-morbid conditions that are so common in autistics – myself included).

    There may not be outright cures but there ARE protocols that make life much more bearable/manageable (especially for those on the extreme end of the spectrum). I’ve manage my associated conditions with B12 (methyl and hydroxocobalamine), TMG/DMG and probiotics (water kefir I’ve found to be the best so far in terms of cost=effectiveness but I had an amazing response to lactobacillus reuteri strain 6475). Combined with eliminating gluten and diary from my diet and avoiding anything with artificial colours (i.e. excitotoxins) and I’ve noticed a profound difference in my ability to communicate and my gastro health is the best it has ever been (I’ve noticed a pattern of IBS being followed by non-verbal days, where I’d struggle to put a coherent sentence together). I now have much more energy and consider myself to be more “stable” emotionally. To start I did a well man blood test to get my base nutrient levels then worked at it from there. I’m now researching amino acids – I’m currently sifting through research articles regarding amino compounds and organic acids detected in autistic children (CSF, plasma & urine) as well as an interesting paper on the detection of phenylketonuria (an inherited inability to metabolise phenylalanine which, if untreated, causes brain and nerve damage) which explains why some autistic children are “cured” when given simple nutritional supplementation.

    I believe that there isn’t a blanket “cure all”, as autism is a reaction to a number of factors combined. I do believe that it is a direct result of our bodies ability to absorb nutrients, I’m not just talking IBS/IBD symptoms and food allergies/intolerences (both of which we all know are common in autism) but at a cellular level, the methylation and sulphation pathways, mitochondrial dysfunction (such as aspartate/ glutamate carrier). I hope this post will push people look deeper into this subject than to just be complacent and accept it as a way of life – as although acceptance is important, it has come apparent to me that autism is a symptom and like all other symptoms it must have a cause.

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    1. I’m certainly not going to flame you. You’re as entitled to an opinion as anyone. That doesn’t mean we have to agree 🙂

      It’s interesting that you see autism as a symptom, whereas I see it as the cause of symptoms. I see it as my brain working differently to a neurotypical one, this has knock on side effects, some good, some bad (just like the neurotypical brain has its own set of good and bad side effects).

      When it comes to my sensory issues, I would describe it as my being more raw and open to everything. This can cause real problems (it definitely causes levels of exhaustion even when not directly hurting me), but it also causes me immense pleasure. I can completely understand someone who is overwhelmed by their senses at all times wanting that reduced. Does that mean dealing with the symptom, or changing the brain function?

      I know I’m getting into the realms of the impossible. You cannot tinker directly with a brain and switch just one thing down a bit. It’s just worth looking at what and how individuals want changes (or don’t).

      I’ve personally never found a correlation between my (healthy) diet and probiotics and how well I am able to speak or socialise. But I will say that there is a definite correlation between my wellness and those things. If I’m ill I find speech impossible. I put that down to my own personal processing powers being reduced by illness.

      I’m more than happy that people are looking at positive and harmless ways to mitigate the negative symptoms. It breaks my heart that practical support services are so difficult to find for many autistics. There are other forms of therapy and help that can be life-changing and increase independence.

      These things aren’t “cures” they’re treatments.

      Part of the problem we have at the moment is the narrative that Autism is terrifying and the enemy. When parents of children see their child hurting and want to help, they see autism as the enemy. Autism is the thing that hurts their child.

      That narrative in turn is heard by adult autistics who feel hurt and upset. Others try to offer their views of autism, to help, but are rejected as the pain and fear of Autism is so great.

      If we change that narrative, if autism isn’t the enemy, it’s a normal neurological difference, but this child had symptoms that mean the world is too raw for them, then we can look together at finding treatments for that child to be the happiest person possible. They won’t stop being a wonderful autistic person, the autism won’t be the enemy, the symptoms will be.

      Liked by 1 person

    2. I disagree that autism is on the rise. The only prevalence study done in adults (screening to find undiagnosed people) found the exact same prevalence as there is in kids. Plus, I have done a lot of research reading old case studies and descriptions of developmentally disabled kids in earlier generations, and the labels and interpretations are different but the behavior is the same.
      No one seems to talk about the fact that as autism diagnosis has gone up, diagnosis of childhood psychotic conditions has plummeted. Childhood onset schizophrenia used to be a common diagnosis, I don’t have numbers but most special ed classes had at least a couple kids with that label or a closely related one. Now, only 1 out of 10,000 kids is considered to have childhood onset schizophrenia. Why? Because the definitions changed. Most of the kids who used to be described as having psychosis or schizophrenia weren’t actually hallucinating or having delusions, or weren’t verbal enough to actually tell what they were experiencing. Now, a kid has to clearly describe hallucinations or delusions to get diagnosed with a psychotic condition. Back then, also, autism had to be present from birth. If you developed normally and then regressed, you had a psychotic condition such as childhood schizophrenia or symbiotic psychosis.
      Also, the number of kids who are just labelled ‘mentally retarded’ without any other diagnosis has gone way down. When Kanner first described autism, he thought they *couldn’t* be mentally retarded. He was more skeptical of IQ testing a nonverbal child than we are now, but he felt that autism required that they show some sign of abilities at age level or above. Either a normal performance IQ score, or some splinter skills, or simply a subjective sense that they knew more than they could express. If not, they were just considered mentally retarded, no matter how autistic they acted.
      A lot of people say “but I see so many more people like that now! I never knew someone who acted like they had severe autism in earlier generations!” The reason for that is simple – inclusion. These kids were often institutionalized or attended special classes with no contact with typical peers. Parents were much more ashamed of having a child like that, because it was generally accepted that bad parenting caused most of these issues, especially if the kid looked normal. So they didn’t tend to talk about their kids with developmental issues. And there was much less of a feeling that people with disabilities are entitled to access public spaces. This was before any expectation of wheelchair accessibility, and in many ways acceptance of physical disabilities seems to come before acceptance of other disabilities. So if going out was difficult, parents were more likely to just keep the disabled child at home.

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      1. Autism is on the rise. There was a study carried out in Denmark which is often used as reference to absolute proof that autism increase is down to changes in diagnostic criteria – however there is a huge miscorrelation when this study is applied to other countries such as the UK, France, Spain and in particular the USA. The studies do show that a large percentage of the increase in autism COULD be (and most likely is) attributed to ‘soft factors’ such as improved diagnosis and awareness but when you factor in the differences country to country (1st world, westernised diet, same diagnostics criteria), the rate of increase differs by up to 60% – which itself is a massive discrepancy.

        Also, perhaps more tellingly – one thing that is irrefutably on the rise is autoimmune diseases, which a number of independent studies have linked with autism (or conclude autism is itself an autoimmune response) – additionally one study found a correlation with parental autoimmune disease and the increased association with autism in their offspring. Scientist have only just discovered (2015!!) that the brain has it’s own lymphatic system – which connects the brain to the immune system directly which itself may corroborate autism as an autoimmune disease …

        The discovery of a pathway for immune cells to exit the central nervous system raises the question of whether disruption of this route may be involved in neurological disorders that are associated with immune system dysfunction, such as multiple sclerosis, meningitis, and Alzheimer’s disease.

        “…these vessels may play a role in pathogenesis of neurological conditions that have an immune component,”

        https://www.nih.gov/news-events/nih-research-matters/lymphatic-vessels-discovered-central-nervous-system

        I’ve ran out of time to finish this but to sum up – autism is on the rise, as are a lot of other childhood illnesses, mental health issues, autoimmune diseases, allergies, etc. What we need to look into are the causes – and in an ideal world no stone should be left unturned (emphasis on the world ‘ideal’).

        Like

    1. Thank you so much. I very much hope that that’s what we all get. Having complete acceptance from those closest to us is the first, and most important, step towards it.

      Like

  5. This is so well written. I’m a support worker for adults with autism spectrum conditions, who range anywhere from very high functioning to nonverbal and requiring personal care, and they are some of the most amazing people I’ve ever met. Yet I have still been asked if I work to cure autism. The sooner people realise that a cure isn’t necessary, the better.

    Liked by 1 person

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