Tag Archives: stigma

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
Multiple speech bubbles

Thinking about suicide? Are you stupid?

TW – Trigger Warning – suicide theme.

Apologies – this title is deliberately provocative. Please be reassured, this is a carefully considered blog looking at the language used when talking about suicide.

I was recently listening to a podcast where someone was talking about their experience of mental illness and they said this:

People say “did you want to commit suicide?”, well, yes, I did want to but I never, I was never at a point where I was stupid enough to think that if I go then my family and stuff is just gonna be like, “oh well, he was alright weren’t he, let’s crack on”. I always knew that, even when I was in my lowest places.”

(We’ll gloss over the fact that “commit” suicide is no longer used since that’s related to when it was a crime, there was a disclaimer at the beginning of the podcast apologising for this language!)

I know he’s not suggesting suicidal thoughts are stupid, he’s admitting he had them, but he appears to be showing a lack of understanding about what actually happens inside the mind of someone when they’re seriously contemplating suicide and it’s language like this that perpetuates the stigma surrounding suicide.

I know it was probably a flippant, off the cuff remark and I don’t want to target him but I feel when talking on a podcast, you’re in a position of influence and I want to use this example to talk about the wider subject, we all need to carefully consider the language we use.

When someone’s mental illness is so severe that suicide feels like the only option, they have got to a point where their mind is not able to think with their usual clarity and logic. From an outside perspective we can see plenty of reasons to stay alive but the chemicals in their brain have altered in such a way that their thoughts are not their own.

When in the depths of depression, your mind persuades you that your family and friends would be better off without you. You may think you’re a burden or you’ve become a person no one would want to live with. So, far from it being a stupid thought, it feels prudent to consider your impact on others and take yourself out of the picture.

The pain of depression has been described, by some, as one of the worst pains a human being can experience. Suicide is not just as easy way out but it may feel like the only option to escape the unending agony.

It’s incredibly sad to think about a person at such a low point but I’m being blunt about the reality because this is how powerful the mind is, it grinds down your self esteem and suicide feels like a legitimate (even logical) way out.

Speech bubbles with question marks in

Sometimes suicide is spoken about as selfish, as though the person is only thinking about the relief they will gain, that they are not considering the hole they will leave behind. Knowing incredibly beautiful, compassionate people who’ve died by suicide, selfish, is not a word I was use to describe them.

If you find yourself feeling anger or bitterness towards a loved one who’s died at their own hands, this is natural; it may feel logical to consider them selfish to have escaped the situation, leaving you to pick up the pieces. I’m not saying your feelings are wrong, if you’re feeling them, by nature of the fact they exist, they are acceptable. However, it may be helpful to consider whether these feelings are keeping you stuck and whether forgiveness maybe a step you need to consider in order to free yourself.

I have also heard people say they “don’t have the guts” to complete suicide. It is very unhelpful to use this language. Talking from experience, it is difficult to think about deliberately putting yourself through pain but, as previously explained, thinking clearly and logically are not possible at this point. It can feel as though it takes bravery but when I’ve got to the point of carrying out a violent act, it’s been a case of reluctantly giving up the fight for life and giving in to the voices telling me to end my life. This was not in a passive way, but in an active “I can finally take some action, do something about my situation, to make it better for everyone”.

It did not take bravery or guts, nor was it selfish, it was simply a symptom of my mental illness.

I know, we will all, on occasion, be clumsy with our language, make mistakes and say things that are less than sensitive, I know I will! But it’s important we’re open to considering how our language impacts others and how we can improve what we say to lessen stigma and improve communication.

If you, or someone you know, is feeling suicidal or expressing suicidal thoughts, please seek help from your GP or other care provider. In the UK, you can call the Samaritans on 116123.

Why we're still struggling to talk about mental illness

We’re making a lot of progress as more people get involved in talking about mental illness but it’s still very difficult for individuals to put their hands up and say “I’m struggling”. I believe fear is at the centre of this and there’s no easy way to break this down but we can do with small steps. 
1. Lack of understand and confusion
When I was first suffering with symptoms, I had no idea what was going on and I had no way of describing my distress – I didn’t know that the tight bundle of thoughts in my head, increased heart rate and tension was anxiety, I had no idea my lack of appetite was caused by an illness, I had no idea that feeling low and having to fake smiles was a sign I was unwell. I was frightened but I had no idea what I was frightened of. I didn’t know anything about mental illness and I had no language to describe it.
We need to raise awareness of signs and symptoms and make talking about our feelings common place, just like we talk about physical problems. More knowledge will make everyone more likely to see if someone gets unwell, and if we’re already talking about, it’ll feel less strange and awkward.
2. Fear of stigma
In general mental illness still has a negative reputation; people perceive the individual as weak or lacking in something. There are many misconceptions, such as thinking that we’re dangerous, unpredictable or unreliable. Some people think it’s our fault we’re ill, that we’ve done something wrong.
The truth is, mental illness does not discriminate, it is not a sign of weakness and we have good and bad characteristics, just like everyone else.
The way I fight this one is to go about my life and when someone least expects it, I let them know a little bit about what I’ve been through – this helps people see me for who I am first, then they realise being mentally ill is just part of me, it does not define me.

3. Fear of discrimination
“What will I miss out on?” is the fear. People worry about all sorts of things if they divulge a mental illness, “will I be able to get a job?”, “Will I lose my job?”, “Will I be able to get the promotion I want/deserve?”, “Will I have fair access to healthcare?”. I have heard stories about people being discriminated against in both work and personal life simply because they happen to have a diagnosis.
Someone’s mental illness should not be used as a excuse to overlook them in anything – it’s important to look at an individual’s characteristics and skills rather than judging them and making assumptions about them based on their diagnostic label. This is not unique t mental illness, there are numerous reasons people will be overlooked or left at the back of the queue – fortunately, the law is on our side. I sometimes feel like I have to work extra hard to prove myself but with perseverance, I hope we can stop discrimination.
4. Normalisation
When I first started having problems, in my teens, I thought it was ‘normal teenage angst’, I thought everyone hated their changing bodies and so I coped with it as best I could. Turns out my intrusive thoughts and anxiety were pathological!
I was trying to explain what went on in my head when I was embroiled in anorexia to a colleague recently (they asked!). I explained about the fear of food, of fat, of calories and of putting on weight. The reaction I got was “don’t all women feel like that?” – this person may have been trying to make me feel better or they may have completely missed my point, that these fears paralysed me and stopped me functioning. No – these feelings are not normal and I had to undergo years of therapy to enable me to eat with strangers or in public.
Sometimes it helps to see symptoms as ‘on the normal spectrum’ but this can prevent people from seeking help if they do not realise what they are experiencing is illness.
It’s important that talking about symptoms is normal but we need to remember the symptoms themselves are part off an illness and need treatment.
5. Wanting to protect other people
When struggling with something, it’s a common human instinct not to want to burden other people with it.
When someone you love is mentally ill, it’s natural to worry about them and want to help, not being able to help/solve the situation can add to the worry! When I’m ill, I do not want people to worry about me, I don’t see the point in someone worrying when there’s not usually anything they can do. It can make a relationship awkward.
Keeping loved ones in the dark does not protect them; people are more likely to worry if they think something is going on but they don’t know what it is. It can help, when telling someone about your illness, to also let them know what they can do. This may be something practical like cooking a meal, to come to appointments or to listen to you, without judgement, criticism or advice, but whatever it is, if someone feels the can be helpful, they are less likely to worry.
6. Guilt and shame
Due to stigma, discrimination and lack of understanding, people feel guilty and shame about being ill. We feel guilty about being ‘a drain on public resources’, we feel ashamed that we’ve relapsed despite therapy, we feel we ‘should’ be better but would anyone say any of this to someone with chronic lung disease or someone or renal dialysis? Of course not!
There is nothing shameful about being mentally ill – it is what it is, an illness, none of us choose to be ill nor are we to blame. We need to have compassion for ourselves, we need to talk to ourselves as we would talk to a close friend who was ill. Once we’re making steps to diminish the (wrongly placed) guilt and shame, we will have more confidence to talk about it.
I know, it can be very difficult to speak out but the current situation with discrimination and stigma will never change if we do not bravely continue to talk about mental illness.