Tag Archives: diagnosis

diagnosis written on screen by person in a white coat

Autism—What’s in a diagnosis? Is finding a community more important?

In a previous blog I was explicit about what criteria had to be met in order for someone to be diagnosed with autism spectrum disorder (ASD). In this blog I’m looking at what a late diagnosis can mean—we’re a group of people who have developed a sense of self without being categorised as autistic:

All I ever wanted was to be normal, now I realised I am, neurodivergent is normal!

This can bring with it all sorts of pros and cons, a sense of relief as well as fear of discrimination. Add to that the idea that this diagnostic label could be applied formally or informally and there’s a big decision to be made.

In different countries the barriers to getting a diagnosis are varied. In the UK, although the process is free at point of delivery (which I don’t deny is fantastic) there are multiple barriers. Initially, it maybe difficult to find an understanding GP; there are still GPs with misconceptions, for example, I’ve heard people get turned away because they were able to make eye contact with their GP. Once the GP has made the referral, the waiting list at the local assessment service is likely to be years.

In most countries a huge barrier to diagnosis is cost. Some adults in the UK will choose to have a private assessment because they simply cannot wait for an NHS assessment. The challenge, when paying for a private diagnosis, will be finding a diagnostician, you can afford, who’s skilled in diagnosing adults. In America the cost can be $1600-$3500 (£1202-£2630) which is rarely covered by insurance.

In the UK, the Equality Act is in place (as an attempt) to ensure people with autism (and all other disabilities/protected characteristics) are treated fairly and without prejudice or discrimination. You do not need a formal diagnosis to be covered by the act. This means, (for example) employers and service providers should put reasonable adjustments in place so that the workplace is accessible and inclusive and you shouldn’t be subjected to bullying, harassment or discrimination because of your difference.

Once you’ve had the realisation that autism is the missing puzzle piece you’ve been searching for, it can be such a relief! So, is a professional diagnosis really necessary? For many in the autism community it simply isn’t needed. There are a variety of groups on social media for people going through the process of understanding what autism means for them as a adult. Neurodiversity is wide ranging and everyone’s experience is different. No-one’s checking if you’ve got a membership card! If you feel this is where you fit, we’re ok with that.

In Australia, this person is seeing a psychologist, they spoke about a possible diagnosis of Asperger’s a few years ago:

I have what’s called a preliminary diagnosis, which means that, in [my psychologist’s] professional opinion, if we went through the process, the answer would be “yes”, and that was good enough for me.

P (Australia)

It’s great that they’re getting the support they need without the need for a “formal” diagnosis. No one in the autism community gives it a second thought whether you’ve got a formal diagnosis, a preliminary diagnosis or are self-diagnosed. Everyone goes through different assessment processes anyway:

Therapist with client

I question whether I have a legitimate ASD diagnosis because my therapist wrote a letter stating so after several visits but I never went through the formal testing that I keep hearing about.

Tom (Canada)

Although autism is a genetic disorder there isn’t a blood test or any genetic screening that can be performed (yet); the assessment process can feel a bit informal to some. The “formal testing” Tom described could be the Autism Diagnostic Observation Schedule (ADOS) but this has been shown to be ineffective in adults, especially females. The Diagnostic Interview for Social and Communication Disorders (DISCO) is more effective in adults, it is more discussion based. Adults go through all sorts of different assessments, some are a couple of hours, others a full day, others happen over several weeks (perhaps to help gain a more rounded picture of the client). Some involve filling in questionnaires and discussion while others may only be discussion based with one or multiple clinicians.

A few tool people might find interesting/helpful if they’re not sure about self-diagnosis include the Autism Spectrum Quotient, Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R) and this list has been put together by Tania Marshall regarding atypical traits seen in female adult. If you score highly in these “tests”, it doesn’t mean you have autism; they are purely tools that provide additional information for each of us as we learn more about ourselves.

I have an official diagnosis but, except my partner, no one else really believes I’m autistic… I’m fortunate that I now have a therapist but I’m not sure the diagnosis benefits me in any other way.

Lucy (America)

Whether you have a formal diagnosis or not, having to manage other people’s thoughts, feelings and expectations can be hard. There are pros and cons of going through the formal assessment process so it’s important that each person weighs these up for themselves.

The assessment process can be incredibly stressful, invalidating and may even negatively impact your sense of self, so if you don’t need to see a specialist, why put yourself through the stress?!

My GP was really helpful. She really listened to me then went through a set of questions, she confirmed my suspicions [that I’m autistic] and agreed to refer me for an official diagnosis but I really couldn’t cope with the stress of all that so I’m happy with my GP’s diagnosis.

Gemma (UK)

Gemma knows that she could go back to her GP at anytime and for a referral for a formal diagnosis but for the time being she’s content that her GP has agreed with her.

Some people would find it difficult to rely on a self-diagnosis for to a number of reasons including being confused by misdiagnosis, masking and lack of confidence in their own self awareness.

I’ve built my life on a foundation of masking, I’ve constantly altered things about myself that didn’t fit in. I don’t know who I am anymore. I’ve been diagnosed as bi-polar but that never felt right. If I mask so heavily, maybe that’s who I am but I’m desperate to unmask and see who am without the mask.

B (America)

Another benefit of going through the formal diagnostic process includes the impact on the autism community as a whole. The more people that receive an accurate diagnosis, the better the statistical landscape, the better educated people can be.

I’m still waiting for my formal diagnosis but I’m comfortable with the fact that those who know me well have had the same extraordinary light-bulb moments that I’ve had, my GP was very supportive and with my medical background and ability to research without bias, I’m very comfortable with understanding the criteria and have no doubt in my diagnosis.

For me, finding the autism community has been like arriving home. So much of my confusing life has fallen into place and is making sense. I’ve felt accepted and have heard experiences so similar to my own it’s been remarkable. If I had to pay for a formal diagnosis I’d certainly think twice about it, I’m incredibly grateful for the NHS but is it acceptable to wait 2 years for an assessment?!

Community wordle

Reality of depression

I write blogs to share my experiences. When a psychiatrist diagnoses depression, they’re looking for a specific set of symptoms described in the DSM V or the ICD 11 all or most of the time over an extended period:

  1. Depressed mood
  2. Diminished interest or pleasure in activities
  3. Decrease or increase in appetite
  4. Subjective slowing down of thought and movement
  5. Fatigue or loss of energy
  6. Feelings of worthlessness
  7. Diminished ability to think or concentrate and indecisiveness
  8. Thoughts of death, suicidal ideation without a specific plan, attempted suicide or planned for suicide.

I understand the need to be able to diagnose in this way but this is not how people experience depression. I’m writing this blog to give some insight to what it’s really like to be inside the mind of someone struggling with symptoms of depression.

In reality, people experience the following, jumbled and apparently nonsensical feelings:

  • I don’t want to make a fuss but I’m worried about how I feel
  • I feel sad, frustrated, angry, scared and numb at the same time
  • Sometimes I feel happy and then I feel confused and guilty
  • I feel lethargic and then I beat myself up for being lazy
  • I cry about everything and nothing but then sometimes I can’t cry when someone tells me something sad
  • Lying awake at nightI feel completely exhausted, during the day all I want to do is sleep then at night, I can’t sleep, I just lie awake
  • I’m not interested in going out, I won’t enjoy it and I have nothing interesting to say so what’s the point?
  • I don’t have any friends and I can understand why, I wouldn’t want to be my friend
  • I just want this pain to stop, it’s a pain like no other
  • I feel like I’m falling down a black hole, like my life is meaningless, is there any point?
  • I’m scared I’m going to lose my job, I just get a feeling I’m doing it all wrong
  • I can’t seem to do anything right
  • My life is fine, I should be happy but I feel like everything is falling apart
  • Life feels like a slog, I don’t think there’s any point in going on
  • I notice other people laughing and realise I’m not but the next day I can laugh and I don’t know what’s different
  • I wish I could go to sleep and not wake up

It’s the job of the GP or psychiatrist to take these experiences and attempt to make sense of them to see if a diagnosis of depression fits. A diagnosis is important so that appropriate support and treatment can be given. Symptoms of anxiety, psychosis, personality disorder, obsessive compulsive disorder, eating disorders or other psychiatric conditions overlap so it’s important to understand what the symptoms are in order to offer the right support.

I always like to offer some hope in my blogs. I’m living proof that from the darkest times, if you surround yourself with the right people, do whatever it takes (therapy, counselling, medication) it may not be easy or simple but recovery is possible.

What’s in a label?

Some say labels are just for cans and boxes but why do people search for years for a label for their illness or disability? Why does it feel so important?

When a diagnosis is finally reached, there seems to be a sense of relief, maybe even satisfaction! Almost “I told you so!” Sadly, before this point, people worry others think they’re faking or exaggerating their symptoms. Without a diagnosis you’re just a list of problems. Before a diagnosis, phrases like “it’s all in your head” are used and the patient feels like no one believes them. Doctor after doctor has said “hum, I’m not sure; you say you feel like this, but the tests say you don’t.”

Finally, the label means validation.

Fibromyalgia is one of those illnesses that takes years to diagnose and people feel they’re not being believed, they’re pushed from pillar to post as their symptoms get worse.

The way I was given the diagnosis of fibromyalgia couldn’t have been further from what I was hoping. It’s meant to be a diagnosis of exclusion. Ideally, you would hear “We’ve done all the tests to rule out these illnesses x,y,z… and they’ve all come back clear, this is good news. (Pause.) This means, we’ve come to the conclusion, it’s fibromyalgia. It’s good, we now know what it is because we can begin to manage it. The way your symptoms are presenting (because they present differently for each individual) we’re suggesting these treatment options…”

In my experience, there are illnesses they haven’t excluded, numerous tests they haven’t done and the news was delivered, while prodding the joints in my hand (for no reason I could understand) “Well (sigh) it could be fibromyalgia”. That was it, they offered no support or treatment. “We might have a leaflet in the waiting room you could pick up on your way out…” they’d run out of leaflets…

Oh well, ignore how I got the label, what mattered was, I had it.

Fortunately, once I had the label, I was then able to find treatment options myself; I found a clinic in London (who only see people with a diagnosis) to get some advice; I had some group session with a physio and an OT and feel I can pro-actively manage the illness myself.

Reactive vs pro-active management

Understanding without a label

“But as long as we understand the difficulties, we just need to make sure individuals get the support they need.” Said a well-meaning nurse to me recently.

Understanding difficulties someone has and the support they need takes time and effort most people are unwilling to give. Understanding what an individual really needs takes knowledge, skills, expertise and often wisdom that most people just don’t have and time people are unwilling to set aside.

This nurse was supposedly reassuring me that they would offer me the support I needed for the difficulties I was facing in the office no matter whether I had a label or not… this supper never materialised… need I say more?

Why a label matters

With a diagnosis you get treatment options – before the point of diagnosis you’re crawling down a corridor of shut doors. At the point of diagnosis, a door finally opens. You’re finally allowed to enter the world of your given disorder and explore the “options”. All you’ve every wanted are “options”, that magical word! There may not be many, but before now, there haven’t been any!

Un-diagnosis can be lonely, with a diagnosis you can often find a community of people facing similar struggles, the support can be there if you want it. In this digital age we have forums of people literally at our fingertips. Just type your diagnosis in Google and there’ll be a Facebook group if nothing else! Sometimes giving support can be just as therapeutic as receiving it.

The mental health community is full of people who say “I don’t have a diagnosis but can I join…?” Of course, you don’t need a label to join but most people find it helpful to know for sure which label fits.

Sometimes the label changes

Sometimes clinicians get diagnosis wrong. Sometimes illnesses change. Sometimes diagnostic tests change or medicine gets smarter. For one patient this could be a traumatic and confusing process, for another it might be liberating.

Without a diagnosis, you may feel like a list of unknowns, more questions than answers. Why do I feel like this? Why do the tests show this? Who am I? What am I? Why is this? Things that don’t make sense and things that don’t add up. With a diagnosis there may still be lots of questions but some of them may start to have answers.

Your illness, disorder or disability doesn’t have to define you, that’s a choice, but a diagnostic label helps things make sense, is validating, answers questions, offers options and more often than not gives you a sense of belonging rather than exclusion that’s been the pain that’s been felt for far too long.