Supermarkets, Motherhood and small kid tantrums

Once a week I go to a supermarket on my day off from work to do the 'big shop'.
Supermarkets are often places of nightmares for autistic people and when I am feeling low in myself, they can be my nightmare.

The lights can be bright. Too bright. I remember my mother saying she couldn't stand a particular supermarket because the lights flickered and triggered her migraines. She's not alone there. I don't like the brightness and the flashing of lights on some displays during some seasonal promotions.
However, I believe the local Abercrombie and Fitch store has gone completely the other way and one requires a bloody torch to find one's way around the shop, to be edgy or perhaps they just use extremely low watt bulbs to create even more profit. I've so got to take a torch there one day.... That's got its own unique challenges for autistic people and the visually impaired!
And don't get me started on them only hiring shop assistants who are pretty since they are 'models' not checkout assistants...

There can just be too much to look at too, making my head feel overwhelmed by the sheer range of choice with each product trying to get my attention through its packaging. I think though this can be offset a little by the way in which the supermarket is laid out so that shelves and people do not feel too close to each other. There are people all over the place with their trolleys too, trying not to ram each other. There's always the stupid one who makes me think that if that's how they push a trolley, I really hope they are not going out into that car park later and drive...
There is the social anxiety of having to get passed someone who's in the way and me wanting to look at a shelf and someone is blocking it whilst on their phone. There's the boxes in cages in front of the item I want because it's seen as a good dumping ground for it. I never quite know if I should move the cage or not.

I don't tend to have many problems with smell and I think perhaps the combination of my asthma and rhinitis limits the extent of it but I do not have a huge trigger in terms of that sense. I don't personally mind the smell of the on-site bakery and I have fond memories from 15 years ago of waiting at a bus stop next to a Tesco supermarket early in the morning breathing in the glorious smell of baked bread. However, there's the people who go crazy in the toiletries section and must sample every scent to make some hideous gas cloud. That will make me feel overloaded and disgusted, as I think most people would, autistic or not.

There's so many people all chattering away to their shopping buddies and to people on the phones. Other noises like the sound systems and public address announcements appear with no warning and can shock if its particularly loud. A particular shop in my home town has a poor quality sound system and pipes the local radio station through it. Alas, I can't easily shop under one of the ceiling speakers as the sound is so distorted and unpleasant that it does my head in. Way to go, M&Co!
Things can go wrong with trolleys and people bang them about into pillars and all sorts.
Children can be screaming and parents call out for their child to come back as they run off to the toy section.

That last one is all very familiar to me on a personal level and I know that it isn't always easy to have a child who has model behaviour out in public.
I have my young child with me who is now 4.

When she was a baby it was complicated as I wanted to get in and out as fast as possible, mostly because no new mother wants a child with a dirty nappy and half a trolley of food all at the same time. As any sensible parent can attest, one feeds their child and makes sure they have a clean bum before leaving the house. At least sudden changes of plan don't normally happen and anxiety doesn't have to occur about what to do about that smelly poo and the unpaid for tub of ice cream in the trolley.
Most of the time it was simple enough if I picked my timings well. The baby would sleep and I would have to fend off irritating people who wanted to ask annoying questions about my child. I generally coped okay because the conversations were very formulated and predictable but occasionally there was the odd person who thought my child was public property to maul over. Setting boundaries with the general public isn't easy for anyone.
Maybe I was lucky but I found myself doing okay. I was more focused on getting about the place and getting back before she woke up and I needed to get back home to express milk for her. I felt like I was mostly in control and holding myself together.

I won't go into this now as I think this merits a post in its own right but I expressed milk for my baby to when she was just over two and a half years old. I found that my tolerance levels to a lot of sensory overload was lower during this time than it normally was despite facing a lot more difficulties with a new child and all the things that a mother will face.
When I weaned, my tolerance levels dropped and the change of routine was difficult for me. There is some research out there about oxytocin and autism. The hormone is associated with creating feelings of love and bonding and it triggers the letdown reflex in mothers that pushes the milk out. I don't know much about it so it requires some looking into but I can say that my time with all that extra hormone in me made me cope well with things that would otherwise have caused me a lot of panic and meltdowns.

However, as my child got older and wanted to no longer be in the trolley, I found my ability to keep her under my control increasingly difficult and I was no longer having my daily top ups of oxytocin. Sometimes we would have peaceful trips but other times the little one would have a tantrum and a battle of wills broke out. If she doesn't get her own way (wants to look at something or have a toy), she might lay on the floor and scream. She can scream and refuse to move. It is a nightmare and I am acutely aware of my social anxiety with people judging me to be a poor parent. Then my tolerance levels for all the sounds and people can crash where I feel everything is coming towards me like all the sounds and people are suffocating me and I need to get out and away, Its like in that moment I become hypersensitive to everything and the world slows down. I feel a tad disconnected from the rest of the world but only for a fraction of a moment, Its extremely weird but it happens over seconds. I have to walk away from her to reconnect and reboot myself and this helps me get the focus I need to be a good parent. I never walk away where I give up my parental responsibilities or so that her safety is compromised but I now distance myself from her by a few metres. I am unsure if this is the best parental technique but it is the best for me. There is no good me having a meltdown whilst in charge of a preschooler having a tantrum. I need to be the strong one when she can't be.

Now, I am able to battle through my anxieties and sensory overload to get myself and my daughter into a place of safety, such as home where we can recover. I can get myself into a state of logic to deal with her rantings by talking to her and understanding why she is upset so most of the time its easier to prevent things from escalating than to firefight. I can do that fairly okay and I can pay for the shopping and drive us all safety to home. BUT, I am tired. I am in a poor way that evening and she's not going to get a complicated dinner that day!

I do acknowledge that a child who misbehaves in a shop is hard enough for any parent (whatever the reason) but when mixed with an autism in the parent, it can make for a stressful experience. All I can do is try and prevent things and take extra care as we head into the busy Christmas period where shops turn EXTRA crazy and not at all autistic friendly.

Interestingly. ASDA is running an hour a week in the Manchester area for an autistic shopping experience, Whilst it might not tick all the boxes for everyone, its great for those who will benefit from less noise! See the article here

Read More

How I came to be diagnosed

I suppose it might be useful to explain how I was diagnosed with autism. I wasn't diagnosed through school or as a preschooler like many are.

It all started in 2000 when I was learning to drive. I have an automatic driving licence as I found it difficult with my coordination and multi-tasking. It took me nearly 18 months to get there after having my first and only manual instructor tell my mother he didn't think I was up to it after 2-3 lessons. It wasn't very nice. I passed on my second test with 3 minors - 2 for speeding and 1 for using an indicator too early.

My automatic driving instructor noticed my abilities were limited and she got me thinking I was dyspraxic as she knew a lot about the condition. It makes sense considering a driving instructor gets to see how people react to the road and how they operate a vehicle.

It wasn't until 2007 through Canterbury Christ Church University where I was studying a MSc in computing that I got an official diagnosis for dyspraxia. It was flagged then that I might have Aspergers. This was later confirmed 2/3 years later after seeing my GP and then seeing a specialist at Folkestone's hospital. I forget the dates, which is funny as they were life changing events!!

When it happened, I felt angry. For a long time I struggled with the autism diagnosis but I was always at peace with the dyspraxia one. I almost became my label and was lost for a few years in it all. It was like my senses became super sharp and everything got on my nerves.
Before the diagnosis, I felt that people had shunned me because they had a problem with themselves and were just bad people but then I realised maybe me was the oddball who was this outsider looking in.

I started to re-evaluate my childhood and it wasn't good. I could see all those moments where things had gone wrong.
I could see those times when I was having meltdowns rather than tantrums.

Like the time when in PE we were setting up some wooden gym equipment using ropes and pullies. I had a beam to lower and the PE teacher was securing something in place. She told me to wait a moment before I continued. So I took her literally and waited a moment and lowered the beam, nearly knocking her head off with this lump of wood. She then humiliated me in front of the class despite that I did what I was told. It was so unjust. I hated her ever after and it made me resent PE more so.

Or when I remember at school we had to do some creative writing that was 'outside the box' so I wrote about a homeless person wanting to get outside of his cardboard box. Some might take that as evidence of autism to take things literally.

I had moments in my late teens of feeling unable to navigate the whole dating thing and would resort to alcohol to cope with social situations. I ended up behaving in ways that were neither safe or wise. I vaguely recall running into a road drunk and nearly getting run over by a car in midst of a meltdown. I thank the swift actions of a much more sensible friend for looking out for me! The story could have ended much worse.

My life was littered with lot of situations of getting it wrong when all I had done was follow the rules exactly as stated or just wanting to be liked and fit in.

It was a very difficult and emotional time accepting the diagnosis and at moments, I actually seriously considered ending my life. I felt lost and didn't know where to turn. I was angry with my schools for not picking up on things and for the system leaving me with a diagnosis and no guidance on how to process it. I had no help except a few contacts for self-help groups that I had zero interest in going to.

I began to realise that back in the 80s, special needs awareness wasn't so developed and I started to let that go. I felt at least at peace with my primary school. I still feel cross that I was left with this diagnosis and no help but I am aware it boils down to one's address. This is generally how it works for medical and care needs. What one gets is dependent on where one lives. It is very sad that there's this inequality in available services.

However, the educational psychologist did identify that I had an exceptional awareness of myself and this was what gets me through life so well. I have never had any proper ASC/D support and I am who I am because I have always wanted to be neuro-typical. At times it had been obsessive.

Some time has passed and I have stopped being so obsessive about this autistic label or at least it's not controlling me so much. At times it does, but it's getting better. I am still trying to accept myself.
It has helped with time as the sensory overload has reduced as my tolerance levels have increased. I have come to realise that the more anxious I am and the more upset I am in myself, the worse it is. Being relaxed is the key and I am a much more confident person, partly as I care much less about pleasing people and trying to be liked. Teenage years are tough as kids so want to be liked by their peers but with age I have learnt that it's not that important beyond school. Real friends will see me for who I am.

I have learnt that I need routine. Being out of work was a time in my life that did me no good whatsoever and it was an extremely low point in my life.
I understand now that I am not a very self-motivated person and need someone behind me to place a rocket under me to keep me on track. I'm blessed that I have various people who offer that and that was partly why my self-employment didn't work out. I get overwhelmed by big tasks and put my head in the sand so it's vital my work is broken down into smaller tasks.

During my pregnancy I completed some medical research at University of Kent on people with Aspergers and anxiety. It was a group thing looking at cognitive behavioural therapy. I learnt nothing from it (although I accept others may well have) except that however bad I thought my life was, I wasn't half as bad as the other guys in the room. It gave me some perspective as to where I was in the autistic world.

I admit my outcome of that research was a little unsympathetic to the others but they were much younger than me and wouldn't necessarily be able to relate to things like pregnancy, partners and having one's house extended. Many were just not as far along their journey as I was so they hadn't yet got to my place too.
However, it's good sometimes to be reflective on the severity of my autism.
I am blessed in that I have achieved all that I have and sometimes I lose my way and don't appreciate what I have.

Read More

Blinded by the light: how I manage night driving

The nature of my job means that sometimes I drive to my place of work, other times I go by train to other more distant sites. I am happy with the arrangement and have no complaints. I have for many years been comfortable with my regular half hour motorway drive. I like it and I have no worries about that kind of high speed commute. The train I don't mind either, except the cost plus reliability (a rant for another day!)...

However, we are now entering into winter and it won't be long until its dark before I finish my working day. By this point I am tired and my tolerances to life drop a little. I am in no way near a meltdown place but night driving after a long day is something I have to be cautious about.

When I first got a car, I had terrible sensory overload at night. My eyes would catch the headlights of the oncoming traffic and I would seriously struggle to filter out the glare. Over the years I have been getting much more tolerant to this and recognising when best to make car journeys. A lot of it is about making sure my eyes are not drawn too much to those lights and to keep them darting around onto other more important things. It came with practice and confidence. I feel much safer too.

When I first started driving, I couldn't have music on. Now, I almost need it to keep my anxiety low. It's not that it's essential but feeling happy keeps the stresses down. The only times it goes off is when I'm doing complicated parking manoeuvres and driving in places I do not know, where I need to be at my peak of concentration and calm.

I hasten to add that I have never put myself, my passengers or other road users in any danger. I would never allow myself to get to that point. I have at times refused to drive and got my husband to when I have been with him. Or I would pull off the road and relax for 10 minutes so I could continue my journey. I would prepare in advance so that I never get into a car whilst feeling frazzled.

So here's my point: I seem neuro typical in that I can do all sorts of travelling in all sorts of conditions. I take it in my stride as a rule. But I do often have a long downtime after. I get home from work and turn the radio off my husband has left on. I sit down and do nothing. I just sit in the nothingness around me, enjoying the lack of stimulation to my visual and aural senses. I curl up on the sofa and veg. I allow the day to drain away from me and recharge so I am ready for when my young child comes home with her father.

So maybe I do have an hour or so between getting home and them getting back and perhaps jobs should be done and I should have eaten.

But I am having to look after myself so that I can face the evening.

This is why I take the train to the other office. Driving would just be too much. But I get there and my struggles fall under the radar because I have made my own reasonable adjustments to my life.

Sometimes we are our own greatest advocates of our needs!

Read More

To declare or not to declare...

I was recently asked by a mother whether her daughter, who was starting to look for employment, should declare her autism on her job application form.

I can see this situation from many angles.

Firstly, I am autistic who is currently employed but has also experienced long-term unemployment too. I've done my fair share of job interviews; some have resulted in jobs, others not.

Secondly, I am my trade union's equality rep at my place of work. I am familiar with British law in regard to the Equality Act 2010 and reasonable adjustments in terms of the employer enabling an autistic person to fit into a workplace.

I wanted to be able to get all excited about the Equality Act and tell this mother that if her daughter is able to do the job, she could be a great candidate. Her autism would be no different to someone with a heart condition (for an office role) in terms of it not holding her back.

But you see, I emmmed and ahhhhed. I wanted to be realistic and not suggest that the Equality Act has somehow removed that barrier to employment. We probably know autism and our potential but can we say the same about the HR department and managers we might encounter on an interview panel?

Let's give an example. I was working in a school a decade ago and busy getting my head around my diagnosis. I was talking to a teacher and she asked if I had light therapy. Well, I was nearly foaming at the mouth!! I was thinking bloody hell: I have a degree (completing my dissertation for my MSc at the time), drove, lived independently and all sorts. Light therapy indeed!!! But this is the thing, if a teacher who may well come into contact with intellectually high functioning autistic students thinks that, what could an HR person think?!
To be fair to the teacher, she wouldn't have necessarily had any autistic training. I never had any when I did my further education teacher training either. It's all on the job 'work it out for yourself with Mr Google' and a brief chat with Student Support.

If we can't trust the recruiters to understand the basics of autism, what should I suggest to this mother?

I felt that it depended on many factors:
The first is the size of the organisation. A large organisation may be accustomed to reasonable adjustments much more readily than a small business. A large supermarket chain looking for cashiers has a large HR department and will be dealing with things across their stores. (Probably a bad example as supermarkets are laden with nightmarish sensory overload 'opportunities')!
Bob's Plumbing services looking for an admin may not have those resources and knowledge to support an application from an autistic person.

But there's no hard and fast rules.
The supermarket may have disability recruitment targets and may be keen to hire. But Bob himself may be a family man who has personal experience of autism with a relative. He may appreciate the sorts of skills an enthusiastic autistic person may give to his business.

So I said all this to the mother and she nodded. And I felt like I didn't answer the question with a definite answer.

And then the situation became murkier.
It's a very neuro typical thing to meet with a bunch of people and be asked theoretical questions on one's ability to do a job.

"Look. I'm not wanting to make friends. I am not interested in work to primarily expand my social circle. I want to earn money in a manner that keeps me engaged. Getting on with people just facilitates that end goal. And yet, the interview panel asks a wide range of stupid questions..."

Tell me three positive characteristics your friends would say about you...

"Whooooa! Hang on... Why ask me?! Isn't that what the personal reference is about?! How the heck do I know what my friends think about me?! Ask them! Oh, and it's a very neuro typical assumption to assume I have friends. Maybe I don't and I thought the job interview was to find out if I fit the organisation, not a test of if I have mates. Notice the statement assumes multiple chums... "

And so the stupid questions go on and some moron might think it's trendy to ask a lateral question too.
It wasn't so long ago I was asked about whether a Jaffa cake was a biscuit or a cake. It's actually got a technical answer to do with tax. Let's not bring my knowledge of VAT case law into a job interview for an IT job...

Then for the higher level jobs, one might have to deliver a presentation on a laptop one has never seen before. Oh, anxiety is seriously spiking now...

So what I said in the end to the mother is thus:
Understand the organisation in which you want to apply to. Figure out if they may be are autistic friendly in their recruitment process. It might just be a wild guess.
If you need reasonable adjustments for the interview, request it. See what happens. It might be an act that puts one's name in the rejection bin (it's wrong but let's not be naive) but don't forget an interview is two-sided. We as job seekers often forget that we are interviewing the employer too. Will we fit in? Will we find the lack of interest in fulfilling reasonable adjustments a nightmare? Do we want to work there?
And of course, if you do not feel like you need reasonable adjustments in the interview process but will do later, you can declare the autism after the contract is signed.

Alas, I am a cynical person and one still must get through probation. It's dead easy to get shot of someone during that time. My view  and it's just that, is that a declaration at least offers some explanation if one fails to meet probation targets. The employer is in a position of strength with getting rid of new employees but at least the diagnosis is documented. And it's discrimination to sack someone on disability grounds regardless of their length of service in the job.
But try proving it... And employment tribunals are not a cheap or a pain free way to go.

Ultimately, finding a job can be hard for anyone. Just be prepared for lots of rejections (often the case for anyone!) and don't give up. There's a good reason why there's a low percentage of autistic people in employment.
BUT: There will be a great employer out there. It may take time but don't give up...!

Read More

Introduction

I have created this blog to address specific problems that many people have who are diagnosed with autism through the lens of my own experiences. My focus is intended to be on people like myself but obviously every autistic person's experiences vary. These people are intellectually high functioning and to the causal observer are by and large neuro-typical. On the face of it, I can blend in with a lot of what society does but it doesn't mean I can and do fully assimilate into the neurotic-typical world.

So I have ticked a number of boxes: I am a university graduate, I have a child, I am married and live an independent life. I am good with money and can organise myself. I am able to maintain friendships and able to (normally) go out and about to social functions. I drive a car. I can make tasty fruit scones. I can even hold down a full time job!

But here's the thing. I am still autistic but I fall through the gap. I do not have significant enough needs for help to be made available when I need it but I don't really fit in. Yet because my problems are not always apparent, I am often faced with feeling like I have fell short of the neuro-typical norms and values in society.

This blog aims to address this and my day to day encounters as an autistic person who feels is too weird for parts of neuro-typical life but not autistic enough to feel part of that camp either.

Read More