A Letter to the Parent or Carer of an Undiagnosed Autistic Girl

The Misadventures of Mama Pineapple

[Trigger warning: mental illness]

Dear Parent/Carer,

I’m writing to you in my capacity both as the parent of a little girl awaiting assessment for autism, and as an adult autistic woman, and one who has spent most of her life, until the age of 36, undiagnosed.

I know you’ve been wondering about your girl. Perhaps someone has said something – a family member, perhaps; a friend; a teacher. Or, maybe, you’ve been thinking for quite some time that this little person might be a little…different. ‘Autism’ is the thing that’s been suggested. And you’re wondering.

Perhaps you’re wondering about the formal assessment process. Perhaps you’ve already begun to get things moving, or maybe you’re little further down the line, and it’s dawning on you that the whole thing is far more arduous than you’d ever imagined. I get that. Totally. My family is there too.

And so, you’re thinking you…

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Executive function

If someone asked me what I find most challenging about being autistic, I would say my executive function impairments.

Every area of our daily life is affected by executive functioning.  It is something that most people take for granted and it is only when it’s impaired that we start to become aware of its importance.

Executive functioning is an umbrella term for a number of cognitive processes such as working memory, planning, flexibility of thought, organisation, impulse control, initiating and monitoring actions.  Executive functioning impairments are well documented in research literature for children but as with most areas of autism research when you start to look at adults the literature becomes more scant. Those of us who engage with the online autistic community however, will be well aware that autistic adults often struggle in this area too.

For a detailed blog series about executive functioning see the blog musingsofanaspie.com.

In my case, I have noticed more problems since I started a family.  Those of us who have kids at school will understand exactly what I mean. So many small jobs that you need to deal with. E.g. pay £1 for this, £2 for that. Remember violin on this day, PE kit on another day. Not to mention the kids social lives.  Even my autistic children have busier social lives than me. I now have to manage three diaries not just my own, (four actually, as I organise a lot of my husband’s non work engagements).

Has my executive functioning got worse or is it just the increasing demands on me now I’m a mother?  Most likely it is the latter.  The situation has become a vicious circle.  I gradually was getting more and more stressed. Stress affects executive functioning, which then means I make more mistakes, which in turn leads to more stress.  Eventually the stress becomes intolerable and that is when my anxiety symptoms return.

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The photo above is a good example of how my executive functioning problems manifest.  Yes, that is 20 pints of milk in my fridge and yes we are only a family of four.  I have similar amounts of diet coke in my other fridge, yet I have no fresh bread. Shopping is challenging for me (I have physical impairments as well as my cognitive ones).  I have strategies which mitigate these problems to some extent, including a huge freezer which has meat, fruit, veg and bread so we will never go hungry. However the extra work involved in compensating for these cognitive impairments is, in my opinion, one reason why so many autistic people are anxious. Long term stress can lead to eventual mental health problems.

Interestingly, I find work much less stressful than home life. Partly because in my previous job I used to focus on only one project at a time.  It is the multi-tasking that comes with parenting that is my greatest challenge.

 

Today’s example

As I have been writing this post, a reminder came up on my phone for a doctor’s appointment. My heart sank as I have promised the children a day in the house (after a busy day out yesterday) and they do not like last minute changes to plans.  I had forgotten what the appointment is for, so I called the doctor to see if they knew. As luck would have it the appointment isn’t until tomorrow.  If we look at this situation, there are three mistakes…

  1. Started by putting the appointment in calendar on the wrong day
  2. Promised children a day in without having tomorrow’s activities in my memory (despite frequent calendar checking)
  3. Forgot why I had booked the appointment

Luck meant that mistake number three meant I didn’t get the kids out of bed, drive them to the doctors only to find out I was there a day early.

I make many errors like this every single day and the result can be wasted hours driving to places I don’t need to be, or worse not going to places where I do need to be.  That is why executive function is the part of autism that causes me the most problems. It can affect my reputation, when I make mistakes at work. It inconveniences family and friends (e.g. when I stand them up).  But I’d say it is the number of mistakes rather than the outcome of them that is most trying.  Some of my social encounters (particularly when socialising with people who aren’t autistic) can hurt me more, but those misunderstandings happen less frequently.

So for everyone else out there with a similar brain to mine, you are not alone.  I think I will write a post about the strategies I use in the future. I will add it to my long list of potential future blog posts.

Curing autism

Yesterday I saw a comment on twitter about the language used in autism communities.  A parent compared the term autistic child to cancer child.  They said that we should say child with autism.  This was later followed by this excellent post which I have made my first reblog.

The medical view of autism is what is generally represented in the media. Humans have a bad history of pathologising anything that doesn’t fit perceived normality.  I love to see autistic adults giving the alternative point of view.

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 […]

via Curing Autism — Autism and expectations

Meltdown

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In my house, we are all autistic and we all have meltdowns.  This post is going to be about a meltdown of mine, I may write about the children later.  It was one of the worst I have had in a long time.  Post autism diagnosis, I am in a much better position to be able to analyse what happened and figure out how to avoid another in the future.

Prior to meltdown

After a month or so of no help with childcare, I had a terrible day yesterday.  I was unexpectedly told to attend a meeting, with lots of new people.  The children had to go to a new and unfamiliar place so they were nervous, excited and boisterous. There was lots of play fighting, which inevitably turned into real fighting.  I rarely take both children out on my own. I was very stressed.

Morning of meltdown

I woke up to my daughter having her own mini meltdown, scratching me, shouting and throwing toys and my paperwork on the floor. She even pushed over the ironing board.  I don’t know what triggered her meltdown, I was asleep when it started.  She has a lot of anxiety at the moment, which I am working on reducing.

The children started fighting, which is stressful enough, but they have recently taken to screaming. A high pitched, loud scream that I can feel vibrating through my head.  Next someone let the dog upstairs. As always if she comes in the bedroom, her morning welcome is to jump all over my head whilst licking me.  It was the final straw and I lost it. It wasn’t even 6am by this point. I was screaming, crying. I felt trapped. People all around me, nowhere to escape. I needed everyone, including the dog, out of my room.  The children are young and autistic and they don’t understand when they need to leave me alone.  They never do as I ask when I shout.  Negotiation is the only thing that works.  So despite my distress they carried on laughing, fighting, repeatedly throwing a towel over my head, jumping on me.  I became more frustrated trying to keep the anger in, because I didn’t want to upset them.  But I can’t once I’ve reached the tipping point.  I soon heard my husband jump out of the shower.  “Come on kids, out of the room, your mum’s gone psycho”. (Neither of us would win parent of the year award for this morning’s performance).  Eventually, I was on my own and hiding under the duvet crying.

It is the first time I have had such a big meltdown in front of the children.  I get snappy sometimes when I’m tired and I have been known to cry in front of them when it all gets too much.  But I have never yelled like that before.  Usually, I can predict that a meltdown is coming and take steps to avoid it.  This one took me by surprise.  Probably because I was asleep and abruptly woke up to sensory overload.

Eventually my husband went to work, my son got his lift to school and My daughter and I were left alone.  She was being her usual chatty self.

“I’m hungry mum, can I have more food?”

“Can we do baking mum?”

“Can we go to the park?”

“MUMMY, why aren’t you listening? MUMMY get me some food”

It wasn’t even 9am by this point and I needed to sit on the sofa and do nothing. I was crying, K was not noticing and chatting away.  Eventually I sent an SOS to my mum. “Please come and take K, I can’t cope with her today.”

Because that is the point.  Sometimes, I can’t cope. K was just being a four year old.  She has done nothing wrong.  Four year olds are noisy and demanding.  I don’t do well in noisy environments.  Particularly when there are multiple sources of noise.  E.g. two people talking at the same time.

My mum came to the rescue and I had my first bit of child free time for weeks. Most of it was spent in bed crying, feeling guilty and worrying that I’m a bad mum.

Post meltdown analysis

With my new self-awareness it is obvious to me what went wrong.  I haven’t been getting any time on my own lately.  The times when I am calmest are when I get at least one day a week to either do nothing, or to do something relaxing like indulging in my special interest.  Circumstances have meant that I am not getting that time at the moment and days like today are the result.

This morning’s sensory assault was the final straw.  The noise, the scratching, the dog licking, the towel repeatedly being thrown on my head. That was what triggered my meltdown, but it has been building up for a while.

I can’t change myself or the way I become overloaded when the children are noisy.  I can’t and wouldn’t want to make the children quiet. They are noisy most of the time, but I cope just fine if my weekly routine includes some time on my own.

So top of my ‘to do’ list now, is to get help with looking after the children. I feel like a failure that I can’t do it all myself, when other women seem to manage.  But I need to get over it and do what is best for all of us.

As far as I know it’s pretty rare for autistic parents to get support from the state for parenting.  Many autistic parents won’t need any support, I know of quite a few fantastic autistic parents.  Others like myself just need a small amount of support.  In my case a break makes all the difference.  Now I have written this post, I feel motivated to have a look at what research on autistic parenting is out there.  My guess is that there isn’t a lot.  Perhaps I will write a future blog post about what I find.

One thing I do know is that there is a stereotype that autistic parents are bad parents. As with so many autism stereotypes, this is nonsense.  However, for those of us who find autistic parenting brings extra challenges, sometimes a bit of respite is all that’s required.

I would love to hear of any examples where autistic people are getting support with parenting if they need it.  I don’t think it exists in England, at least not unless the children are autistic too.

The stigma of autism

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I have been learning about autism for a few years now as it is my current special interest. With so many autistic people in the family, it’s been a very useful obsession.  I can spend many hours reading and learning about my special interests and it never feels like a chore; more like much needed ‘me time’.  More about my special interests in a future post.

I decided to blog for two reasons. Firstly, because so much has been written about autism that is complete drivel.  Some of the statistics quoted by charities do not appear to be supported by research (I will write more about this later too). Even where stats are evidenced based, much of the research is questionable, to say the least. Worse than just being nonsense, much of the discourse is actually damaging to autistic people. There are well known people in the autism community who do research, write books and speak at conferences but don’t seem to realise what they are saying may be harmful to those they are supposed to be helping.  I’m perhaps being generous writing that they don’t realise, maybe they don’t care.  Secondly, I have been making many positive changes to my life recently.  With the increased understanding of self which an autism identification brings, I am starting to forgive myself and others for the past.  I anticipate writing to be cathartic.  I’m hoping I’ll be able to document thoughts and feelings which I find difficult to articulate in real life.

There is unfortunately still stigma to being autistic.  This in turn means people are less likely to come forward for voluntary identification and less likely to disclose their autism, thus preventing access to services and support (but don’t get me started on the pathetic access to services, even for those who do attempt to use them).

Autism is too often seen as lesser.  Autistic people are dehumanised by autism ‘experts’.  In 1997 Simon Baron-Cohen wrote in his book ‘Mindblindness’ that Theory of mind (something that autistic people supposedly lack) is ‘one of the quintessential abilities that make us human’. The implication was that those who apparently are impaired with theory of mind are not human.  This was 20 years ago and I do wonder if he would regret writing those words now.  Today though, there are still frequent examples of autistic people being dehumanised.  How many articles do you read where the parents write about their autistic child but the child’s opinions are ignored? Look at the language that regularly gets used, for example, ‘autism mom’ to describe non-autistic mothers of autistic children.

Chris Packham was called a ‘nutjob’ after disclosing he is autistic. As if that isn’t bad enough, look at the headline the insult generated in the Mirror. ‘Chris Packham branded ‘nut job’ … after Asperger admission’.  What the hell is an ‘Asperger admission’?  You admit to committing a crime or having an affair.  You admit to something bad.  I’m pretty sure at no point in his book (which I am halfway through – it’s excellent) does Chris P say ‘I admit it, I’m autistic’.  No, whoever wrote that article decided ‘admit’ was the appropriate verb to use with regard to autism.  Because they consider autistic people must be ashamed of being autistic.  Some autistic people are ashamed, and is there any wonder when we get bombarded with this negativity constantly.

If autistic people are considered inferior, damaged non-humans who cannot speak for ourselves, others are more likely to want to cure us, or give us therapies that turn us into non-autistics. Which is a damn shame as despite the difficulties autism can bring, I love being autistic and I love my family in all their glorious autisticness.

Typically Individual

Are autistic people disordered or sick? Or are we simply a minority brain type that is rarely accommodated.

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Before I start this post I would like to write that it is not meant to offend. It is just my view and how I feel about being autistic. Some people with autism may disagree.

What does it mean to be autistic? A search of the internet might inform you that:

  • Autism is a lifelong developmental disability (NHS).
  • Autism is listed in the DSM V (diagnostic and statistical manual of mental disorders) which would suggest that it is a psychiatric disorder.
  • Receiving support as an autistic person often requires that one identifies as disabled.
  • To prove you are entitled to this support you have to be formally ‘diagnosed’. Diagnosis is generally a term reserved for the sick.
  • In order to be able to get the formal diagnosis you are assessed by a doctor of some description, perhaps a psychologist or a psychiatrist.  The doctor will consider your ‘symptoms’ and whether they fit the diagnostic criteria.

What if all of this is wrong? What if being autistic is just another way of being? A particular brain type, which functions as well as any other given a suitable environment. I don’t see myself as disabled (by autism), disordered or sick. Yet I am autistic. I’m happy to be autistic.  Many others may feel this way if they hadn’t had a lifetime of being conditioned to think of themselves as disordered or broken.

Being labelled as autistic brings with it stigma.  Many false stereotypes still prevail: lack of empathy, no sense of humour, poor imagination. In actual fact autistic people are as diverse as the non-autistic population. We can have successful careers, be part of loving marriages, raise happy children.  We can be funny, friendly, kind.  Some autistic people have very difficult lives, perhaps because they are struggling in a world that doesn’t understand them or accommodate them.  This however isn’t the case for all autistic people. Just like the non-autistic population, we are individuals. We are typically individual.