Autism & Self-Diagnosis

Autism is a developmental disability, not an identity.

It's kinda nuts that I have to actually say this.   

My friend Emma distilled our observations into this lovely, concise sentence, after we talked about the changing public perception of autism over the last decade or so.  When a bunch of autism mums get together, the chat ranges from shoes, to sexuality, to psychology..... usually flavoured with an undercurrent of autism.  It's always savagely interesting and massive fun when we meet.

We noticed that the face of autism has become more Elon Musk than Rain Man (and even Rain Man, annoyingly, had 'gifts').  Autism has become genius, rich, eccentric.  This is a far cry from the limiting, screaming, nappy-wearing autism that most of us are familiar with.

It used to be that the public believed that autistics possess some genius savant abilities that transcend their disabilities.  Of course, most don't.  Even if they have bizarre talents in some areas (for example my son has a jaw-dropping memory around eastern European languages), this doesn't stop him eating toilet roll and needing help to have a shower.  Speaking Albanian does not compensate for his utter lack of road safety, or his inability to prepare his own meals. 

Autism disables him.   

Now, in some quarters, the perception of autism seems to have mutated into being seen as a personality glitch, instead of a limiting developmental condition.

Within the special needs community, it seems like a sizeable (and pretty loud) section have watched a few episodes of Big Bang Theory and decided that they're card-carrying autistics. Incredibly, some people declare themselves to be on the spectrum, and expect to be taken seriously. Many become most offended when challenged.  

Here's the bottom line.

Self-diagnosis is not valid.

You can't do an online quiz and self-diagnose autism, anymore than I can feel a bit tired and decide I'm diabetic. 

You cannot adopt autism as a personality trait.

Dramas like The Good Doctor, and some dating shows, push the impression that autistic people are endearingly quirky, but that their social ineptness is overshadowed by their misunderstood genius.  They portray autism as delightfully, lovably, eccentric...... and who wouldn't want a bit of that?  The media seem to be turning autism into something desirable, into this season's new black.

This is a dreadful disservice to most autistic people who do not have the executive ability to live safely without intensive support.

We may suspect we're a bit spectrummy, at which point it would probably be prudent to ask for referral to a psychologist.  

Dr Google is not a psychologist. 

Autism is a neurological, developmental condition.  It can't be taken on and off like a raincoat.

Finian was diagnosed at the age of 3 after many months of assessments by a multidisciplinary team.  On the team were a psychologist, an occupational therapist, a speech therapist and a social worker.  They took into consideration data collected from us, his SNA, his teacher and the therapists he was seeing at the time.  They assessed him at home, in school and in the clinic.  Prior to this he saw a paediatrician who had the arduous job of ruling out all other possibilities, such as fragile X or cerebral palsy; to this end he had a brain mri and was screened for genetic and metabolic disorders.

It is not easy to diagnose autism.  

To feel a bit socially awkward, or do a five minute online test, and announce to the world that you're autistic does a huge injustice to those with a valid diagnosis.

Autism is not a cute, sexy must-have accessory.  It's not this season's dog in a handbag.  It needs to be respected as the carefully diagnosed condition it is and not be diminished into something as dilute as an identity trait.

not autism

Autism & Adult Services

We are deep in the trenches of planning Finian's transition from school to adult services.

We had another meeting today to try to shuffle things forward an inch or two.

It's tiresome, and built with a matrix of uncertainties and wait-and-see's.  So far, though, no-one has given us the bum's rush out the door.  I'll take my positives where I find them.

All the professionals we meet are lovely.  I have no doubt that they are all fighting in Finian's corner.  It's not the people within the system who turn the road into treacle.  It's the system itself.

Our already complicated lives are further perplexed by having to repeat the same information to multiple teams, multiple times.  I lost track of which team serves what purpose ages ago.  When you're preoccupied with raising a special needs kid, extra layers of red tape tend to get lost in the haze.

The process is arduous and anxiety-laced.  This is bearing in mind that, as supports go, parents are not all placed on a level playing field.

It is with something close to guilt that I'm aware I have the support of a great husband, close friends and dear family.  We can comfortably manage to pay the mortgage and put food on the table.  We have the benefit of education to help us navigate the criss-crossed waterways of disability services.  Finian is as healthy as a grass-fed ox, with no extra conditions tangled up with his autism.  Our older 'kids' are thriving, (almost) independent adults.  

And we find it draining.

I find myself thinking about the parents who start out on the back foot.  The single parents.  The ones who worry about paying the rent.  The ones who sweat at the supermarket checkout in case their card is declined.  The ones who struggle to comprehend the layers of bureaucracy-speak.  The ones managing two (or more) special needs kids.  The ones struggling with their own health issues.  The ones who carry the weight of tube-feeding their children or injecting them with insulin.  The ones who cry themselves to sleep with lonliness.  The ones sporting bald patches where their kid ripped plugs of hair from their scalp.  

I'm not diminishing my own experience, but the balance of good fortune is tipped in favour of some.

While I'm deeply grateful for the supports I have, it's kinda crap knowing that not every special-needs parent has these.  

Unfairness is part of life.  But that doesn't make inequity any easier to bear.

Autism & Grizzly Bears

I've written about Autism and fear before, but it's a weighty topic.  It's too big an animal to reconcile with in one post (or maybe even one lifetime).  

I visualise fear as a grizzly bear napping on my kitchen floor.  I try to tiptoe around him.  I fear disturbing him, so I mop around him.  I know there's a large, bear-shaped patch of muddy floor beneath him.  But as long as I can't see the gritty shadow, and he remains sleeping, it's not a problem, right?

I've dealt with many guises of fear in therapy.  It has shown up in the shape of people, loss, trauma, powerlessness, illness, abandonment, perfectionism and all the slings and arrows of life.  I've survived them all.

But there's still a big fucking bear on my kitchen floor.

Most of my defense mechanisms have been therapied out of me.  I can't (and won't) think, drink or distract my way past this. 

We're in the middle of planning adult services for Finian.  I use the word 'planning' advisedly, as we have no idea what we are planning for.  Illusion, smoke and mirrors mostly, it seems.  Endless meetings, assessments and soul-destroying forms circle back on themselves with no clear destination.  

In 3 months Finian will turn 18 and leave the familiarity of school and respite.  The path he's blossomed on abruptly terminates at a cliff edge we can't see over.

I'm terrified.

The well-being of my vulnerable son is in the hands of people I don't know, turning cogs I don't understand.  He could be lucky and be placed in a day service where he will thrive.  Or he could be dropped like a stone with a wry shrug.  His fate will be decided by funding, politics or a rubber stamp.  My husband and I are advocting for him at every turn, but one day we'll be gone.  He'll be at the mercy of faceless people in offices who are more concerned with budgets than humanity.

I'm sick of being scared.

At the risk of snapping an already stretchy metaphor, imma poke the bear awake and either dance or be devoured.  I've wasted a lot of time and energy avoiding the fear.  I need to sit with it, feel it, meditate with it and process it.  I need to integrate the fear as part of my tapestry instead of having a wild animal controlling my home.

The only thing to fear, is fear itself is a cliche because it's true.  I've learned that embracing difficult emotions fully always leads to growth...... it's just that without awareness, my default poition is avoidance. 

I'm curious now about what this will unfold.

Fancy a chat?

Autism & Murdering Trees

Yesterday I woke up with the intention of  working on an assignment, but I ended up murdering trees instead.

Tree genocide (in the form of wasting paper pointlessly) is not something I'll proudly add to the Achievements section of my CV (it's surprising that so many agencies still use paper in this digital age).  Tbf, if I'd dealt with the growing mass of forms a bit sooner, it wouldn't have become such a big chore......  but it's nice to have something to complain about.

I was kinda hoping that if I ignored the forms long enough, they'd disappear, or maybe even complete themselves.  But they sullenly remained un-disappeared and un-completed.  Anyway, it reached a tipping point where I was either gonna have to change my identity and flee the country, or put on my Big Girl pants and dive in.

So I dove in.

I completed a form reviewing my Carer's Allowance (€39 per week to spend wantonly as I please).  The paperwork required for this alone is eye-watering.  They wanted hard copies of three months of bank statements (approximately 8000 pages) and my husband's payslips. I can still hear the trees screaming.  More worrying though, is the prospect that they'll further cut my allowance.  How will I maintain my lavish lifetsyle?  I may have to find a sugar daddy to keep me in Bollinger and Lacroix (sorry Husband Dear, but I'm being penalised for you working hard.  What's a girl to do?).

I booked my NCT.  Next appointment available is August.  Wtf.

I filled out a tax form for the dentist.  The same form I fill out EVERY visit.  Sigh.

I started a form applying for adult services for Finian.  It cunningly tricked me into a false sense of security with its apparent simplicity..... until I realised that I need to catalogue 17 years worth of schools, services and hospital admissions.  I literally can't remember what I did 2 hours ago.  The ink may now be unreadable due to my bitter tears.  Hate that.

I booked a smear test and ordered prescriptions.  Disappointingly easy.

Then I tackled Finian's prescription sheets for respite, which now need to be taken to my GP, collected in a few days and then returned to the respite centre.  Reassuringly complicated.

All powered by a triple espresso and a family-sized bar of wholenut.

As a great philosopher once said, what a load of bollox.

More strangers know my PPSN than friends know my phone number.  

I could have spent a happy morning eating doughnuts, judging dysfunctional families on Say Yes to the Dress, or buying impractical online fuckery.  Or doing responsible parenting stuff, obvs.

Wasting time, energy and resources, repeating the same information to the same people, makes the Trials of Hercules look elementary.  He'd tap out in five minutes of being a special needs parent.

the trees are screaming

Autism & Assessments

Now that Finian is in his final year at school, we're going through the process of figuring out adult services for him.

Progress is slow.

The lack of certainty is anxiety-inducing for him.  We can't tell him where he's going or what his day will look like.  We can't tell him how he'll get there.  We can't tell him who he'll be spending his time with.

His need for reassurances that we can't give him is exhausting for us.  I can only imagine what it's like for him.

The wheels are in motion.  Emails have been sent to faceless people with officious job titles.  We've already had meetings with psychiatric services and occupational guidance services.  We're awaiting a cognitive assessment.  We keep hearing "it takes time".  They're not wrong.

His assessment of needs was tough.  The man who carried it out was kind and sensitive, but it was impossible to sugar coat his level of dependence.  To us, Finian is our funny, sweet, infuriating dynamo.  To disability services he's a set of deficits.  

I understand it's nothing personal.  They need to score him to match him with services.  I guess that's the hurtful part of it...... it's nothing personal.  Charts and checklists miss the beautiful, surprising soul who makes me my Best Self.

It's intriguing that difficult, sometimes painful, processes can help us to grow and see life through a clear lens.  His simplicity and lack of falseness are traits to aspire to.

It's a strange system where humans, especially vulnerable kids, can be reduced to a number on a score sheet.