What IS Autism – From An Autistic’s Perspective

A reader asked if I had a blog post that described what Autism is. I started to say that this entire blog gives great first hand information from Autistic people.

Our experience can not really be summed up in a one page post. There are a lot of things that make us different.

First I want to say that each and every Autistic person experiences the world in a very different way so what I state below may not be true for everyone. I am going to go over some generalizations that are true for me, also taking in mind what has been shared with my by my amazing readers.

We tend to struggle with spoken communication but many of us do VERY well behind a keyboard.  We can have tricky short-term / working memories but a LOT of us have long-term memories that are FOREVER. We need time to process and go over things but once we understand something it stays in our minds (or that is how it is for me). Time to organize and prepare thoughts is essential for me because of this.

Many of us have sensory sensitivities. Bright lighting can cause chronic migraines and other illnesses. I can hear everything which is unpleasant because I can’t tune individual things out. My hearing is essentially so sensitive that I can’t hear conversations in busy rooms. Not to mention the distraction of every small noise seeming VERY loud. Clothing can be itchy and irritating. Tags and socks are the worst and certain grooming activities can be extremely uncomfortable. Getting a mani-pedi is NOT relaxing for me. Even getting a massage is difficult because of another person touching me can make me want to jump up and run.

I have a hard time sitting still. Our bodies (and minds) crave constant motion. I am always playing with something rocking in my chair, humming or singing. This is called stimming. It is a regulatory behavior and helps with sensory input, relaxation, and focus. I also speak to myself out loud a lot. These things “normal people” don’t tend to accept but we REALLY need them to.

Many Autistic people have comorbid conditions – other illnesses with their Autism. Some examples are insomnia, epilepsy, IBS, OCD, anxiety, depression, migraines, apraxia, ataxia, sensory processing disorder, the list goes on. These, in my mind, are not Autism but rather Autism related conditions. They differ from person to person.

Autistic people can be extremely intelligent but learning disabilities and intellectual disabilities can also happen with Autism. Just like “normal people” our IQ’s are all over the place. People often assume Autistic people all have intellectual disabilities. I prefer to think of it as a difference. Also EVEN non-verbal (non-speaking) Autistic people can fall into the “high IQ” category. Never assume an Autistic person cant’ understand you.

I can speak but am not as good at it as most “normal people” but there are a lot of Autistic people who have apraxia of speech. This means they may have all the words and thoughts inside BUT the mouth pieces don’t move. For some reason the brain can’t tell the mouth and related parts how to work. Some children speak late and others never speak. I had no speech delay.

Dyslexia and Hyperlexia are also common in Autism. I am Hyperlexic.

Our brains tend to be spiky. We can be far above average in some pretty random areas, art, math, music, memorizing, writing, or not. At the same time our deficits in the areas that don’t develop as fully can be perplexing to the word’s general population.

For example – my conversational skills are so limited that I can NOT tell when my turn to talk is. My solution? Don’t talk. Before I stopped talking people kept calling me rude but I was doing my best. I never wanted to be rude. I’ve become more quiet and contemplative – more of an observer than I used to be. Actually this has been an improvement.

Autism is invisible. Unless I am stimming wildly in a chair or flapping my arms wildly you would not see my Autism – and these are things I do in private. Any time I try to share with someone that I am Autistic, a 34 year old woman who appears to have it together, I am dismissed.

I try to share mostly when I am looking for some understanding about an accommodation that I am about to ask for. I ask for little things – natural light, a quiet spot, to be able to take notes on a laptop.

Often people tell me I don’t “need” these things and that I am making excuses for myself. I just want to do my best. This is the hard part, when you ask for help and people say “nobody else will have that” or “it’s not fair to play favorites” even better “you already have it pretty good”.

Summing it up in a blog comment or post is impossible. Please dear readers, I ask that you provide your own experience in the comments so that the world may someday redefine wheat Autism is from OUR perspective.

 

With love,

Anonymously Autistic

“Anna”

 

#ActuallyAutistic #InvisibleAutism #AutismAwareness #SheCantBeAutistc #AnonymouslyAutistic

 

 

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50 thoughts on “What IS Autism – From An Autistic’s Perspective”

  1. Dear Anna – Convinced that we should task you to write a manual to all the healthcare workers and therapists out there. Your descriptions are spot-on and sensitive; confident and cautious. Thank you for sharing your thoughts.

    Liked by 3 people

  2. I look normal, I have a great vocabulary,but my motor skills and balance need a lot of work to make it happen.
    At school, I found making friends almost impossible, I was picked on by peers, I believe it to be called bullying, it can be so without physical assault, I was worthless. Nothing really to tell a teacher, but totally destroying to any social confidence.
    My family knew there was something ‘wrong’, but in the 60s, only boys had autism.
    In spite of being ‘quite bright’ intellectually, transferring to paper is a slowish process no matter how hard I try. Examinations were the bench mark by which you were judged, so for further education, the doors were shut tight. In the job market, much as I gave it everything, I was too slow, this lead to being thought lazy, my already battered esteem was crushed some more, my social anxiety grew. I was fired again and again in spite of bending over backwards to be agreeable and give my all.
    Having a breakdown, led to a description of depressed (of course I was bloody depressed) looks fairly normal, a bit cross eyed, but otherwise good.. For 20 years I hid under the shelter of depression, I could not face going back into the work place ( job count in its teens, all FAIL). I claimed benefits in order to live, I felt bad about that, regularly I was hauled into the benefit offices and was expected to ‘bare all’, I was afraid of losing my income and I was afraid of putting myself up for another knock down.
    Three years ago, I let a in a female friend, we had such fun, she knew I was clumsy and slow, but did not seem to mind. Then after about 6 months she turned cold, I was devastated! However she did me the favour of telling me I must be a.s.d. And suggested I saw my g.p. And told her what she had told me. Another blow to my fragile self esteem!
    My G.P listened, she put me on a list for investigation. It took nearly 12 months waiting. I saw a very lovely gentle man for my assessment. I am fortunate enough to have both parents still with me. He interviewed them too. After lots of talking and soul baring, re living all the pain of school and work days, I received a report, which confirmed Aspergers and a.s.d. Other things were touched upon like sensitivity to light, labels food, pennies dropped all around.
    It was truly an epiphany! In bright light, I was feeling discomfort leading to anger and frustration, but now I know why. I have difficulties with clothes, comfort being paramount to style, in an extreme way. I have a hatred of labels showing on clothing and for years have neatly snipped labels out of my clothing, but not given a thought to why. Now if I have clothing that is not comfortable I identify the feeling of irritability that would previously have been a real problem, but now I know why, most of all I can remedy it. I know why I dislike going out alone, I know I have to concentrate if I do, roads being a hazard. So finally at the age of 54 and having to fight with myself forever. I have the knowledge of why I was the butt at school, and I forgive them for doing what nature demands, is picking out the weak. I have hopes that the world will become more enlightened and try and help fellow workers as work is all part of personal worth. The great thing is, I have a certificate, reasons, I no longer have to pretend to be what others want. I can be me and finally I can start enjoying the journey!
    If anyone is still reading, I thank you xx

    Liked by 4 people

    1. I was not diagnosed till I was 30. I had bullies, teachers, students, and even my own family. SO much of the confusion in my life could have been avoided if I knew I was AS earlier. I’ve had a few big burnouts before too. They suck maybe they would not have happened if I had known. What I DO know is we NEED more awareness. Not for the “normal people” but for the Aspies who are confused at why life is so hard for them.

      Liked by 1 person

  3. Do people ever reach out to you asking, “How can I help?” in a given setting or with a task. Your list of problems or potential problems is long and if people understand they may offer support and guidance.
    When I was working on my doctorate in the 1960s not once did I see an “autistic” child or adult. It was like they didn’t exist. Maybe they were fewer in number but I’ve grown suspicious. Suddenly we have diagnoses for things which were not “illnesses” before. Recently we got a “diagnosis” for people who wanted a healthy diet as if that was a problem or illness.
    What strikes me from your list is that I could make a list and then check off the kinds of problems which I share. I understand it is hard to admit that there is an issue and we tend to hide our problems or weaknesses. We should be able to do better.
    Now I have a major problem. My hearing has gone bad. I’m finding I need to be forthright and ask people to talk directly to me and speak up. It is a learning experience because many quickly again drop their voice or seem dismissive.
    I think my bottom line in this is that the public really needs to become aware and forthcoming. We can help each other and openness is really quite helpful. Another bottom line – thank you for sharing your story.

    Like

    1. The biggest problem is a.) people don’t believe I have AS – they think I am making it up. b.) People don’t understand how much I really need these things because they don’t need them. People don’t comprehend.

      Like

      1. I basically dropped out of the world after high-school. I tried to “suck it up” with all the bullying, worsening auditory sensitivity and running into hateful discrimination when telling people I CANNOT be around small children as they are unpredictable: quiet one minute and painfully loud the next moment-one of several “everyday” sounds My autistic system cannot process-even with earplugs, unless I can get away immediately. The special accommodations in the workplace like natural lighting should be written into the ADA. I read a blog post where the author said fluorescent lighting is on its way out. It was never meant to be used beyond World War II. I can handle the lights, but not an environment full of blaring ringtones, children or dogs, even when quiet. Autism does include anxiety. I nearly took my life several times-in part due to the sensory issues and in part due to the rejection and even punishment I received due to screaming and hitting myself and others during meltdowns. I still think struggling and isolation is all there is for me, dotted with some blessed moments of peace.

        Liked by 1 person

  4. This is great.
    I’d like to share my own thoughts as to what autism is from an autistics perspectives, but perhaps on my own blog. Any objections? I’d link to this post obviously.

    Liked by 2 people

  5. Reblogged this on ARC Books and commented:

    Yet another fantastic post from anonymouslyautistic with some fresh information; I was not aware that my sleep problems could be related to my autism, though I suppose it’s all just one bit interconnected issue for me: autism, problems sleeping, anxiety, depression.
    It would be nice if I only had to deal with one problem.

    Liked by 1 person

  6. One of my friends has Asperger Syndrome. I didn’t believe it at first and told him I thought he was just eccentric- of course I believe him now! I just don’t understand Asperger Syndrome. Can you direct me or describe it in such a way I might understand better? Thank you!

    Liked by 1 person

  7. Reblogged this on ioinviaggio and commented:

    Anna ci presenta la sua visione dell’autismo dall’interno, essendo essa stessa autistica. Per avere una corretta informazione di ciò che è l’autismo, senza generalizzazioni, perché ogni autismo è diverso dall’altro, è necessario andare ad ascoltare ciò che le persone autistiche desiderano dire di sé .
    Ecco le parole di Anna : Cosa è l’autismo da una prospettiva autistica.

    Un lettore mi ha chiesto se avevo un post sul blog che descrive ciò che l’autismo è. Ho cominciato a dire che questo intero blog dà molte informazioni di prima mano da parte di persone autistiche.

    La nostra esperienza non può davvero essere riassunta in un post di una pagina. Ci sono un sacco di cose che ci rendono differenti.

    Prima di tutto voglio dire che ciascuna persona autistica sperimenta il mondo in un modo molto diverso, quindi quello che affermo qui di seguito non può essere vero per tutti. Ho intenzione di andare oltre alcune generalizzazioni che sono vere per me, tenendo anche a mente ciò che è stato condiviso con i miei sorprendenti lettori.

    Tendiamo a lottare con la comunicazione verbale faccia a faccia, ma molti di noi sanno comunicare molto bene dietro ad una tastiera. Possiamo avere difficoltà con la memoria a breve termine ma molti di noi hanno ricordi a lungo termine, ricordi che sono per sempre. Abbiamo bisogno di tempo per elaborare e andare oltre le cose, ma una volta che abbiamo capito una certa cosa, essa rimarrà sempre nella nostra mente (o questo è cosa accade a me). Il tempo di organizzare e preparare pensieri è essenziale per me a causa di ciò.

    Molti di noi hanno disturbi legati a forti sensibilità sensoriali. Una illuminazione brillante può causare emicrania cronica e altri problemi. Posso udire tutto ciò che è sgradevole perché non riesco a sintonizzare i suoni individualmente. Il mio udito è essenzialmente così sensibile che non riesco ad ascoltare una conversazione in stanze affollate. Per non parlare della distrazione di ogni piccolo rumore che percepisco in modo molto forte. Alcuni abiti possono causare irritazioni e fastidi alla pelle. Le etichette degli abiti e calzini sono le cose peggiori e alcune attività di relax possono essere estremamente sgradevoli. Ricevere un pedicure o un manicure non è piacevole per me. Anche ricevere un massaggio è difficile a causa di un’altra persona che mi tocca me e mi fa venir voglia di saltare e correre via.

    Stare seduti immobili è un’altra cosa difficile. I nostri corpi e le menti hanno bisogno di un costante movimento. Sto sempre a giocare con qualcosa, dondolando sulla mia sedia, mormorando o canticchiando. Questo si chiama Stimming. Si tratta di un comportamento stereotipato e aiuta con input sensoriali a rilassarsi o a concentrarsi. Parlo anche molto a me stessa ad alta voce. Le “persone normali” in genere tendono a non accettare e a non comprendere questi comportamenti ma noi ne abbiamo davvero estrema necessità.

    Molte persone autistiche hanno insieme al loro autismo condizioni di comorbidità – (coesistenza di più patologie diverse in uno stesso individuo) Per esempio l’insonnia, l’epilessia, ansia, depressione, emicrania, aprassia, atassia, disturbi di disordine sensoriale, l’elenco potrebbe continuare. Queste condizioni aggiuntive , secondo me, non fanno parte dell’autismo, ma piuttosto sono condizioni che si possono correlare all’autismo, che si aggiungono ma non sono l’autismo in se stesso. Esse differiscono da persona a persona.

    Le persone autistiche possono essere estremamente intelligenti, ma difficoltà di apprendimento e disabilità intellettive possono anche accadere nell’autismo. Proprio come le”persone normali” il nostro quoziente intellettivo può variare. La gente spesso ritiene che le persone autistiche abbiano tutte disabilità intellettiva. Preferisco pensare a ciò come una diversità. Persino le persone autistiche non verbali possono rientrare nella categoria di “elevato QI”. Mai ritenere che una persona autistica non sia in grado di capirti.

    Io sono verbale ma non sono così brava ad esprimermi come la maggior parte delle “persone normali”, ma ci sono un sacco di persone autistiche che hanno aprassia di linguaggio. Questo significa che esse possono avere tutte le parole e tutti i pensieri al loro interno ma i muscoli della bocca non si muovono. Per qualche motivo il cervello non può dire alla bocca e alle parti correlate come lavorare. Alcuni bambini parlano in ritardo e altri non parlano mai. Io non ho avuto ritardo nel linguaggio.

    Dislessia e Iperlessia sono comuni anche in autismo. Io sono iperlessica.

    Il nostro cervello tende ad essere frastagliato. Possiamo essere di gran lunga sopra alla media in alcune zone piuttosto casuali, come l’arte, la matematica, la musica, la memorizzazione, la scrittura, oppure no. Allo stesso tempo, i nostri deficit nelle aree non sviluppate nel modo più completo possono essere imbarazzanti.

    Per esempio – le mie capacità di conversazione sono così limitate che non so quando è il mio turno di parlare è. La mia soluzione? Non parlare. Prima che io smettessi di parlare la gente diceva di me che ero scortese, ma io stavo cercando solo di fare del mio meglio. Non ho mai avuto intenzione di essere scortese. Sono diventata più tranquilla e meditativa – io sono solita essere una osservatrice. In realtà questo è stato un miglioramento.

    L’autismo è invisibile. A meno che non stia dondolando in una sedia o agitando le braccia in modo evidente (stimming) nessuno si accorgerebbe del mio autismo – e queste sono cose che io faccio in privato. Ogni volta che provo a condividere con qualcuno che io sono autistica, una donna di 34 anni che sembra avere tutto insieme, io vengo allontanata.

    Cerco di condividere soprattutto quando cerco un po’ di comprensione per una sistemazione che sto chiedendo. Domando le piccole cose – la luce naturale, un posto tranquillo, per essere in grado di prendere appunti su un computer portatile.

    Spesso la gente mi dice che non ” ho bisogno” di queste cose e che sto cercando scuse per me stessa. Voglio solo fare del mio meglio. Questa è la parte più difficile, quando si chiede aiuto e la gente dice “nessun altro avrà le cose che ho” o “non è giusto fare preferenze” o “tu hai già abbastanza e bene”.

    Riassumere tutto in un post è impossibile. Per favore , cari lettori, vi chiedo di aggiungere la vostra personale esperienza nei commenti in modo che il mondo possa un giorno ridefinire cosa è l’autismo dalla nostra diretta prospettiva.

     Con amore,

    anonimamente autistica

    “Anna”

    Liked by 1 person

  8. I think you’ve captured many important points.

    Here’s a couple more –

    My son does not like watching movies where the characters are in realistic perilous situations. But he can watch movies like the Hobbit which have action scenes, etc. When I asked him what’s the difference, he typed: “I seem to not have a filter between what’s real and what’s not. It feels very real to me – like someone’s getting hurt right here in our living room. Hobbit – they’re obviously not from our world so that helps with the separation.”

    He loves nature and walking/biking on trails. Like you said in one of your posts, you feel good when you’re close to nature. All of his friends on the spectrum are similar in this way.

    He does not like people arguing/shouting/getting nasty. It scares him, makes him very anxious.

    Liked by 2 people

    1. Oh my goodness – I am an autistic adult and I experience the same feelings with fiction and films. I avoid stuff which is too realistic but I love science fiction and fantasy, because they make me aware that what I’m seeing is not in the here and now. I am also calmed significantly by being in a natural setting. I used to hike a lot but now I have Fibromyalgia I can’t walk very far so I go fishing and get the same feelings of peace.

      I find Anna’s posts really helpful, but also the links to others in the autism community with brilliant comments like this are super!

      Liked by 2 people

  9. I love massages! 🙂 Though I do find it painful at times and get up too quickly; once needed a glass of water after I got up from a massage to prevent fainting. (I fainted in 2010 after a meal when gran was shopping as I had low blood pressure, had to go to hospital)

    Liked by 1 person

  10. Anna, I noticed your comment on massages, and wanted to mention that for me, the way a massage is done makes a huge difference. If all the movements are slow, my brain doesn’t seem to decide that I’m under attack. I can pay attention to my body and sensations, and those seem less shut down after a good massage (or exercise session, for me.)

    Not all massage practitioners “get” how to do a good slow, gentle massage that is also working on deep sensation; I’ve had a couple who kept speeding up even when I asked for the massage to be very slow, perhaps they thought I’d get used to them, not sure. Maybe some massage techniques are just faster per the theory of how it works on the body? No idea. My nervous system just doesn’t get used to fast massage though. I can get scared if the person doesn’t respond to what I ask.

    Music without words is better during a relaxing massage too, no frying my brain trying to pick out the words.

    So… that really deep gentle pressure in some massage feels just wonderful to me. Maybe it’s the same part of the nervous system as the “weighted vests” or “weighted blankets” work with, for some autistics; the massage has the possible added benefit of helping with muscle knots and other physical muscle issues. It helps me connect to my body, and over time it has really helped me feel that some people can be very very safe.

    Of course, a cat on a blanket on my legs is also the ideal weighted blanket! 🙂

    Liked by 1 person

  11. I recognize all the traits you are describing here in yself, I only seem to be like that in a very mild or “flattened” way, (I would not call myself autistic but maybe the term “slightly autistoid personality” might be appropriate) being maybe somewhere in the middle between autistic people like you and “normally disabled” ones (i.e. the ones suffering from HCS, see my (satirical) text https://asifoscope.org/2013/01/28/hyper-communicativity-syndrome-hcs/ ).

    Liked by 1 person

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