Welcome to Steve’s Aspie Adventures

Whether you are reading this as a parent, carer, friend or are on the spectrum yourself, a warm welcome to the blog and I’d welcome your comments. I was diagnosed with an autism spectrum condition as a teenager. Throughout my life this has brought unique challenges, deep lows but also very happy times. I hope with this blog I can share some of my experiences, challenges and successes with you. My hope is that it can help along the way at breaking down some of the fears, misconceptions, stereotypes that come hand in hand with Autism by giving an insight into what it’s like as an individual living with the condition.

At times when I’m affected most by my condition life can grind to a halt, but that has given me a drive to experience all I can when I’m feeling well. Travel brings a new perspective on life and the experiences it brings have made my good days even better and given hope in my bad days. For me it’s a metaphorical middle finger to a life-long condition. In my other blog (Roaming Steve) I share some stories of my travel and adventures.

I hope you enjoy reading this blog. Feel free to share this with your friends if you've found it helpful. I'd love to hear your thoughts, any topics you'd like to read about and own experiences so please comment or message me.

Please note, that in all my blog entries I can only relay my personal experiences and perspective. It is important to remember that every single person on the spectrum is an individual with a different story to mine. I have no medical expertise or training and am writing to share my personal experiences only.

Sunday, 22 June 2014

10 things you shouldn’t say to an Aspie

Most people on the autism spectrum have probably had their fair share of comments and questions directed at them that make their blood boil just a little. Sometimes these are callous and hurtful remarks, but mostly it is from someone genuinely interested and trying to understand. When faced with an often misunderstood condition like autism, it is natural that people will have misconceptions, questions and an interest, but unfortunately this can come across in unintentially hurtful or unhelpful remarks.

I’ve compiled a humorous look at the top ten list of comments I’ve personally received. Please note that I have High Functioning Autism / Asperger’s Syndrome so my responses reflect this.

1. You look so normal. Are you sure you’re autistic?

Ok, so how does autism look?!? This type of statement is so common that I’ve lost count of how often I’ve heard it. I believe this statement is often intended as a compliment, but that’s rarely how it comes across. In reality it can offend on so many levels. After all what exactly is ‘normal’? So am I sure I’m autistic? Yes! Do I need to prove it to you? No! Unfortunately this was once raised by a manager at work who insisted on second opinion and sent me for re-diagnoses, and the results…‘See, I told you it was!’. The reason it’s not always evident is a combination of peoples misconceptions of how a person with autism should behave and my own strategies at blending in with the neurotypical world.

Now would it help you if I wore a label….

2. Stop hiding behind the label of autism.

Well you wanted me to wear the label! The difficulty of autism is that it’s invisible. Sometimes it’s really in everyone’s benefit if I can explain why I might need to approach something in a different way or may be acting in a slightly unexpected way. Good examples are the police alert card and times where I’m feeling overwhelmed and need to leave a situation.

So if you don’t want me to have the label afterall, perhaps you can wear one so I know you might be asking me silly questions…

3. Get yourself out more, that’ll make you feel better.

Ah yes I see you’re wearing the label, I’ll answer this before you open your mouth again!

Often a generic response to anyone feeling a bit down is to tell them to get out more and cheer up. That’s not what’s happening here. I might feel down or anxious at times, just like anyone else, but getting out more will probably make it worse. One of the more distressing aspects of autism for me is sensory difficulties. When I’m feeling run down for what ever reason my ability to process the world around me drops significantly. This can quickly cause a sensory overload where it feels as though the brain has crashed. Sounds and light become painful and communication almost impossible. I’d rather this doesn’t happen and I’m sure you wouldn’t like it either. I think I’ll stay in and listen to some soothing music thanks.

4. You look uncomfortable, stop doing that with your hands, it looks strange!

Well I told you going out wouldn’t help! Yes I know I look uncomfortable and I’m acting strangely. The more you point this out the more self conscious I’ll become and the more ‘autistic’ I’m likely to act. Sorry, that’s how it is! I’ve very aware of how this is. If it makes you uncomfortable then that’s your issue to deal with. If I’m feeling uncomfortable or starting to struggle please be respectful and accepting and things are more than likely going to resolve themselves without any dramas. Making an issue of it is likely to result in the dreaded meltdown…

5. Aren’t you too old to have temper tantrums!

Yes I am, that’s why I don’t have them! Meltdowns are a different beast altogether. In essence a meltdown is your brains reaction to becoming overloaded and just like a computer crashing, it reboots itself. While this is happening (for me usually 10 – 30mins) I cannot make any logical sense of the world around me. This can be deeply terrifying and disorientating.

From the outside it can appear to happen with no warning at all and be in direct relation to not getting your own way. In reality it is often simply that a small misunderstanding or upset has tipped the balance due to any number of factors you are unaware of. The biggest differentiator between tantrums and meltdowns is that tantrums are conscious and controlled, meltdowns aren’t. A tantrum is likely to quickly fade when the person gets their way or when not observed, whereas a meltdown will continue until it’s run it’s course, be repetitive and have after-effects of fatigue and confusion that can last days.

The terminology used for this experience varies from person to person which can lead to confusion. The way this manifests itself also varies greatly. Some rarely experience this, for others it’s a crippling daily struggle.

This is a huge topic that I’ll cover in more detail in a later blog.

6. You shouldn’t rely so much on your parents to help you, you’re in your 30s!

Don’t get me started on this one. Whether you like it or not in some areas I need more assistance than the average person. deal with it! I’m lucky enough to live a fairly independent and self sufficient lifestyle, but if I’ve had a bad turn things can grind to a halt. If this means that I require extra support then it shouldn’t be a concern of yours, everyone needs help some times. The level of support required and ability to live independently varies greatly from one person to the next. Perhaps instead of criticizing someone for asking for support and labelling them as lazy, you could politely ask if there is anything you could do to make things just a little bit easier.

7. How many ceiling tiles are there?

It is true that there are autistic savants out there with some incredible abilities, but not all of us can do that, maths and mental arithmetic certainly isn’t one of my strong points. One of the features common to aspies is strong and focussed interests so certain facts can roll off the tongue at ease. Ask me about mushrooms or US geography and I’ll quite happily talk at you for hours, but ceiling tiles – no. By the way, there are 136.5 tiles in this room.

8. My (friend’s kid, neighbour, cousin….. ) is autistic, you’re not like them.

No I’m not. I’m like me. Autism is a broad condition that doesn’t define who a person is. Every individual on the spectrum is just that – an individual. How and to what severity the condition presents itself in an individual varies greatly, as does that persons abilities and strategies in coping and overcoming what life throws at them.

9. let      me     speak     slowly     so      you      understand      me

OK,     let    me     reply      slowly      as       you       don’t       seem         very           bright

10. It must be hard not having any empathy with anyone.

Yes and no. Yes it is hard, but not because of lack of empathy, it’s because of this common misconception that we don’t have empathy! Personally and certainly with many of my friends on the spectrum there is no lack of empathy at all. What is lacking is the ability to instantly read the non verbal clues and signs to read what someone is thinking or feeling. This can come across as a lack of empathy, which for me often leads to great remorse at not having realised how someone felt. Recently at work I was asked if a colleague sat in my office was OK as she seemed very stressed. I had been sat next to her for 6 hours and simply not noticed anything as she had not vocalised her feelings. When I realised, I felt hugely upset that I had not been supportive or helped a colleague who I hold in high regard and been ignorant of her stress  This isn’t a sign of lack of empathy, it’s a sign of inability to read body language.

Thank you for taking the time to read this list. I’ll discuss further many of the topics touched on here in later blogs. The list could easily continue much further but If you have any comments and responses you’d like to add to the list I’d really enjoy reading them. Please feel free to post in the comments.


  1. I love this!!! So often people question whether my son has aspergers -Yes he appears so normal but that's because of years of therapy & hard work on his part & mine & my husbands, and since when did you become n expert on diagnosing autism spectrum disorders?? It drives me wild when people assume he has no empathy -he would have to be one of the most caring, empathetic people I know & any form of social injustice really upsets him, we can't even have the news on at home because it upsets him far too much...

  2. Thank you Rachel. I will definitely be covering bothe of these topics in more detail in future posts :-)

  3. This looks like a relatively new blog. You are providing great insight, thanks for taking the time to post articles like these. Son has Asperger tendencies and I'm trying my best to "understand". It's surely is a roller coaster ride!

  4. Hi Steve - I often recommend your blog to people - both parents, aspies and colleagues. Very insightful - thank you for the time you take to help us understand each other better. Karen Wilmshurst - Autism Wessex

  5. Steve, you're awesome! I am enjoying reading your blog, you have a great entertaining writing style. I can't wait to read some more of your posts. Thanks for putting up this blog, I am an NT wife to an ASD hubby and he and I are enjoying finding interesting articles on living day to day life with ASD.

  6. I am newly diagnosed at 36. Due to a combination of physical disability, chronic illness, ADHD (diagnosed after my first year of college) and ASD my BA degree took 7 years, living with my parents after the first when I got sick- though reading my journals from that year I'm not sure how long I would have had before the ASD issues sent me there. After getting my degree I went home, and realized my trouble with in-person communication when I realized I could chat about nothing, as opposed to a group with even a loosely planned intellectual subject. So now I am trying to deal with people outside of book groups, discussion groups, classes, and hobby groups. I now know I'm face-blind, I know I don't make eye contact and am trying to find a balance between eyes, foreheads, over-the-shoulder things where I can get some of their expressions- and being so overwhelmed by those I loose everything else. Several people in my church group know now, one because she recognized a shut-down and got me out of the youth center gym where the noise reverberating off of the brick walls in the half-court room and the visuals of they players, which were constantly changing as players tapped others in, undid even my plan to only watch the basket and clap whenever the ball went through. Had the insight to know I needed physical help but with as little touch as possible and to stand behind me with one hand on my shoulder and wait for me to talk. So learning how to say things I'm just beginning to understand is hard, but you have helped.