The road to diagnosis: Barriers

Our readers tell us about their journeys towards evaluation of autism, ADHD and other neurodevelopmental challenges. This is a summary of the theme “Barriers” — factors that obstructed, helped, slowed down or sped up the process.

 
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--- Kajsa Igelström och Maria Strömberg ---

This is a loosely translated version of the original Swedish post. We recently ran an anonymous informal questionnaire called The Road to Diagnosis, which gave us stories from about 250 people (women, men and transgender individuals).* We’ll summarize the results over several blogposts, and this is the first one. Most participants had been diagnosed with autism or ADHD (or both), and a small number had other diagnoses such as DCD, tics or dyslexia. Cisgender women were in majority (84%) and most participants had been diagnosed late.

Here are the most common factors that were crucial (in either direction) in the process of seeking evaluation and diagnosis of autism/ADHD.

1. Let’s start with a lottery

People born in Sweden already have an advantage. For example, many adults in the USA in a recent study of ours referred to financial factors as a major barrier, and this appeared less common in Sweden. In addition, compared to some countries in Eastern Europe, Asia and Africa where neurodevelopmental differences may be extremely stigmatizing or completely unrecognized, there is more awareness in Sweden.

HOWEVER… the stories we collected showed an enormous variation in treatment, waiting times, and other factors. It became clear that even within the small country of Sweden, it’s a bit of a lottery. Local politics and geographical differences in the healthcare system seemed to matter a lot, and individual clinics had different policys on who they would or would not evaluate.

Geographical variability is understandable, and the variability within the healthcare system depends in part on variable abilities to take in the constant flow of new knowledge, and in part on variable competence of individual health professionals.

But the fact that the process had gone smoothly for some and taken many years for others, irrespective of clinical difficulties, shows that the process can work almost seamlessly but often does not. We suspect that before all contributing factors have been identified and standardized, one just has to hope to… be lucky.

Which leads us to the next point.

2. Meeting the right person

Many stories included complicated unfruitful rounds within the healthcare system, followed by the description of suddenly meeting a person who suspected what the problem was. It could be a social worker, a psychologist, a general practitioner, an occupational therapist, the person evaluating one’s kids for autism/ADHD…

Suddenly there was a person across the table, who had enough knowledge, creativity or energy to help get a process started towards insight and diagnosis.

These random encounters could happen at almost any point in the journey, it seemed. We saw few patterns, except 1) it often happened during the evaluation of one’s child, or 2) it happened after many years of mental health problems and appointments with countless health professionals.

3. One’s own insight may be a prerequisite

Many had not been lucky enough to run into a person who could guide them towards an evaluation. In those cases, the turning point was often one’s own insight, obtained through the experience of a relative with the same diagnosis, or through information in media or support groups.

After this point, some chose to live with the knowledge without seeking diagnosis, using new strategies to improve their function and becoming more forgiving to themselves. Such “self-diagnosis” was common in our first research study mainly involving people in the US/UK, where barriers to autism diagnosis for women and transgender people often involved fears of discrimination, losing custody or not being believed, and the logically sound argument that “there is no help to get anyway so why should I live with the stigma?”. In this Swedish group, it was pretty uncommon to be satisfied with self-identification — most wanted to get the diagnosis for validation or support.

Many more described a scenario of getting an insight that provided the motivation and courage to present their theories to a health professional. Again, the theme of having to encounter the “right” person showed up in the responses, but as long as that happened, evaluation and diagnosis often followed.

“Insight” obviously doesn’t guarantee that one has interpreted one’s own function in a correct way. But since insight was so often described by late-diagnosed people as a necessary trigger for getting the right care, we believe it indirectly reflects a real, important barrier to diagnosis:

These individuals are often “invisible” in the healthcare system until they themselves understand and present the possibility of autism/ADHD.

4. Chameleons fall between the cracks

Camouflaging has been discussed a lot in the most recent years, especially in the context of girls and women who had never externalized the problems. Masking of diagnostic traits is not unique to the female gender, but it has mainly been framed in that context. Some talk about “the female phenotype”, i.e. that autism and ADHD may manifest in ways that haven’t been properly described and studied yet.

Our network of participants currently comprises many “chameleons” who, through observation, training and a drive to seem normal, have become masters at hiding anything that could be interpreted as abnormal. They are so analytical and verbal that they can describe it eloquently and with great insight, but in real life, things can fall apart.

Several people described how they had been denied an evaluation entirely based on previously having studied or worked full-time. Others went through an evaluation and were told that they fulfilled all criteria when it came to the traits, but that they could not get diagnosed because their cognition/function was too good. These were people who had camouflaged for a long time, until they crashed and burned later in life, in ways that could not be called autism or ADHD (burnout, depressions, etc).

Camouflaging can literally be life-threatening. A recent study suggested that camouflaging of autism increases the risk of suicidality. The hundreds of stories that we have received from adults in a number of countries have shown us in a very palpable way how destructive it can be to not be able to exist as Oneself.

Which leads to our last point:

5. Smoke screens of psychiatric consequences

Adults and adolescents who live with neurodivergent minds without knowing it often suffer horribly. They find their own explanations for feeling different, not coping with school, failing to obtain and keep jobs, or becoming exhausted by the smallest things. They might identify as lazy, useless, alienated… There are many versions of how one’s mind can construct explanations for the chaos or alienation. It’s actually quite natural. The brain finds patterns based on the information available.

The most common descriptions of life before a diagnosis included intense psychiatric suffering and often burnout (the latter is a relatively common diagnosis in Sweden). We know from other studies that those who don’t get an early diagnosis may instead get a collection of other diagnoses, often depression, anxiety, bipolar disorder and personality disorders of different kinds.

Sometimes, those psychiatric conditions are later re-interpreted as consequences of the underlying autism/ADHD. Sometimes they are viewed as independent disorders. But whatever happens later, all those psychiatric problems may have formed a very effective smoke screen throughout adolescence and adulthood. Autistic adults have even been called The Lost Generation. People can drown in a stormy ocean of failures, stigmatizing diagnoses, counterproductive therapies and self-hatred.

There is hope

Despite all the negative descriptions of barriers to diagnosis and their consequences, it’s possible to see some solutions hiding between the lines:

The knowledge in society and the healthcare system must be broadened and standardized between different regions (and countries), to detect autism/ADHD quickly, also in adults. We are moving in that direction. More and more healthcare professionals learn to recognize the symptoms, more and more scientists get interested, more and more journalists and editors choose to report on it… It will get getter.

We also need to discuss what a “requirement for support” (needed for diagnosis) really means, and how to discover a need for support in high achievers. For example, we hope it’ll become less and less common that people get barred from getting an evaluation due to having a degree or job on their CV.

We always love feedback and more stories.

*This post is part of Extraordinary Brains’ outreach work, where we ask questions, individuals respond, and we summarize the responses in an informal way on the blog. In addition to these online summaries, we use the information to inform the design of new research studies, done on site in Sweden and online as questionnaires.

Is Camouflaging a Balancing Act?

Journalist is seeking autistic people willing to share their own camouflaging experiences!

 
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I am a journalist writing a major feature in Spectrum on camouflaging, on the latest research and personal experiences. I would like to find people willing to share direct experiences. What are the costs or camouflaging versus the benefits? Is there anything else about it that you'd like to say?

Submissions closed – the piece was published in Spectrum and The Atlantic.

Voices on compensation in autism

--- Kajsa Igelström ---

We put out some small questionnaires in January to March, 2017, to see if we could get some information and inspiration from the autistic community about various issues. In general, the open-ended format was not ideal for most people, so we don't have enough data for formal publication. This is a little informal report on The Compensation Questionnaire. Even though only four women responded with detailed accounts, they were interesting and generous and I wanted to write about them here. 

We asked two questions: 

  1. Please tell us if/how you use personal strengths to compensate for any challenges accompanying your autism.

  2. Are there any autism-related challenges that you find difficult or impossible to compensate for?

 

Compensation strategies

The four women lived in the US or Finland, and were between 23 and 61 years old. Quotes were edited for grammar or spelling if needed. 

A few themes shone through all their responses, in particular the need to FIGHT, all the time, to function in the world. Other themes were the use of structure and discipline to manage life and the use of intelligence to compensate for weaknesses. 

 

A constant fight

Several women expressed that life can be a real struggle, and that they need to apply all their strengths all at once to get by. This is something that's increasingly discussed: the ability of autistic women to mask, or camouflage, their deficits. They can be so incredibly good at it that they escape a sorely needed diagnosis, have their diagnosis questioned by doctors and even family members, and often use so much energy to function "normally" that they are constantly stressed and exhausted. This use of camouflaging, while useful in some ways, can be a source of alienation and might even contribute to comorbid mental illness. 

"Certainly I use my intelligence, creativity, detail-focus, skills, knowledge, memory, visual thinking and hyperfocus to solve my problems. Aggression is my number one tool to get things done and to survive. But it has a high energy cost. It is not fair that I have to use it to survive in daily-basis. /.../ It surprises me every day that I haven't 'lost it' if you think of how difficult my life is. I go through enormous amounts of of suffering and compensating and I am still going on and trying... Everything seems to fall apart and I am still trying."

"Most of the time I characterize it as 'endurance.' I put it in terms of self-discipline and fortitude, which I use to contain and manage distress. I consider myself extremely self-reliant."

If the compensation strategies break down, the women may find themselves in a complete meltdown. Here is a poignant description from one of our participants: 

"There are some complete breakdowns in the way I process information. If I can't find a work-around, or come up with some rule of thumb for certain types of problems, then I lose coherence. This is the primary cause of what few meltdowns I have. I call it 'losing the universe.'"

 

Structure, hyper-focus and discipline

Even though several women described symptoms indicating difficulties with executive functioning, a co-existing strength often seemed to be a strong ability to create structure and rules. This is a well-known strength of autistic people, and also contribute to the tendency for strong interests that – to the neurotypical person – might seem repetitive or restrictive. These interests and behaviors can of course be turned into an asset, as several of our women described quite unequivocally. 

"My ability to hyperfocus can't be switched on or off on demand, but when it does kick in, it allows me to actually focus enough to get something done or learn versus being distracted by something else. And while my desire for sameness can get a little repetitive, it allows me to perfect cooking recipes. My desire for rigid rules and structures can make parenting stressful, but because of that I am an awesome driver."

"I can get really interested in topics and compile lots of information about them, which can sometimes come in handy (particularly as a graduate student). /.../ I am happy to take on repetitive or organizational tasks that others might find boring, so I can use this to make myself indispensable to a group, as I become the-person-who-does-that-task."

Another strategy was the use of lists, logic and reasoning, to create much needed structure and to compensate for organizational and social difficulties. 

"I make agendas for meetings with advisors and other important people and lists of things to talk about for Skyping friends. /.../ I use lists, plans, and organizing to help with time management (I used to be awful at this). /.../ I work through things logically in general.

"I also am very intelligent, and use my reasoning capabilities to analyze problems."

"I have rules for dressing appropriately."

 

The "Golden Rule For Aspies" & other social strategies

Finally, some of the participants mentioned the use of quirky humor to improve social situations and the use of strong personal/ethical values to overcome social challenges. I particularly enjoyed a slightly modified "golden rule" for aspies, provided by one participant: 

"Do unto others according to your best guess as to how they would treat you if they were treating you the way they want to be treated."

 

Seemingly insurmountable challenges

Our second question to the four women was whether there were any challenges that they found impossible to compensate for or deal with. The answers mainly involved sensory challenges, verbal communication, and social requirements like dressing appropriately. 

"There is no method I've found which is able to reduce the magnitude of my sensory experience. The world around me is literally painful to me."

This participant hypothesized that the relationship between anxiety and sensory overload is different between autistic and neurotypical people. While neurotypical people can get hypersensitive to stimuli when they are stressed and get irritable or stressed from them, autistic people have a primary sensitivity to stimuli that causes stress that can't be removed unless the sensory stressor is removed. This way of thinking had been helpful to this participant, because she can view her anxiety as physical rather than a form of generalized worrying. The best way to deal with this anxiety for her has been to try meditating/breathing or changing the environment, instead of trying to "talk herself out of" the worrying.

In terms of verbal communication challenges, one participant described increasing problems with getting thoughts out in a coherent manner, despite being able to visualize and conceptualize them inside her head. This is something I have heard other autistic people describe too. Another participant described problems regulating the physical act of speaking, resulting in such fast speech that it could get incomprehensible to others. 

Finally, the problem of figuring out how to dress is something I encounter frequently in my interactions with autistic people. For women, this can be an especially troubling social deficit owing to social expectations. One participant said: 

"Despite my rules, I still dress "wrong" sometimes. One time I was home and came downstairs and my mom told me I was dressed wrong and I exclaimed that I'd invoked 7 separate rules to put the outfit together and listed them and then she told me what I still had to fix."

 

Take-home message

Given the small number of participants, I don't really want to write a formal summary. Let's let the voices speak for themselves, and let's remember that autism is a common condition and that everyone is different. 

But there is one take-home message I do want to articulate, and I draw upon my collected interactions with autistic people in the past five months. Autistic people are still struggling out there, and there are not enough support structures in society to help ease this fight. I hope we can continue to make a difference, in whatever ways we can.

Thanks for reading! Our initial informal pilot studies and new formal scientific studies are being analyzed, planned and written up. We hope you consider participating in the future!

The Autistic Women's Questionnaire: Getting diagnosed

--- Kajsa Igelström ---

Autism in women is thankfully being increasingly recognized, even though we still have a long way to go to ensure adequate support for everyone. Improvements occur steadily through personal blogs, autobiographical books, increased research funding to studies on sex differences, and social media movements like #shecantbeautistic. Autistic women are beginning to find venues in which they can express themselves and find acceptance.

 

The Women's Questionnaire

We put out the Women's Questionnaire at the start of 2017, inviting autistic women to share their thoughts on any topic pertaining to being a woman on the spectrum. We received responses from 27 women (10 from the US, 9 from the UK, 3 from Finland, 2 from Australia, 1 from New Zealand and 1 from Germany). This was a pilot study aimed at getting inspiration for further studies and to give a voice to those with things to share.

We'll split our report and discussion of the result over several blog posts. This first one deals with one of the most dominating themes in the Women's Questionnaire: the challenge of getting a diagnosis. 

 

The wish for an earlier diagnosis

In a previous pilot questionnaire, the Strengths & Challenges Questionnaire (we'll report more on that too eventually!), we asked the question of whether respondents felt they should have been diagnosed earlier. We did not have enough male respondents to make a comparison between sexes, but the answer was pretty clear among the 55 women who answered all relevant questions:

A whopping 82% said that they strongly (64%) or somewhat (18%) agreed that they should have been diagnosed earlier in life. 

None of the women had been diagnosed before the age of 11, and 75% had been diagnosed after the age of 20. (Note, however, that our primary recruitment venue was closed Facebook groups, which almost certainly biased our sample towards women who did not get enough help from society).

 

Many years of suffering

It is likely that the age of diagnosis is decreasing, but today's adult women were often diagnosed after a childhood/adolescence/adulthood of turbulence, alienation, depression and other problems. Such experiences during brain development are difficult to recover from, although an autism diagnosis can often be the start of a process towards self-acceptance and better social experiences.

In the Women's Questionnaire, respondents were free to write anything they felt was important, and thus no specific questions about diagnoses were asked. Despite this, the most common theme, expressed by a large proportion of the women was a grossly delayed diagnosis and many years of suffering from not understanding themselves or others.

Their first-hand experience was often that professionals lacked critical familiarity with autism in females, with some women even being told that they can't have autism because they are female. Superior skills in camouflaging or compensating for difficulties were mentioned frequently as a barrier to diagnosis and a source of alienation.

 

Women's first-hand experiences

There is probably no better way to illustrate the problem than letting the women speak for themselves. Here are a few quotes from our respondents (edited for brevity and spelling that would reveal her geographical origin):

"We are conditioned from birth to be friendly and accommodating as women [and] this gets in the way of diagnosis. People do not see me as autistic because of this."

"Many people fail to understand that autism presents differently in women /.../ Even medical professionals /.../ seem to think that if you can have a conversation with them, you couldn't possibly be autistic."

"/.../ [N]o one ever recognized the signs of autism for the first 26 years of my life, so I went through it struggling and thinking nothing could help /.../ and/or gas-lighting myself into believing [my problems] weren't real or I was being a hypochondriac."

"I was diagnosed in my thirties. I was diagnosed with different things before, including ADHD, depression and dyspraxia. I don't disagree with the diagnoses but a lot of solutions offered did not work because of my underlying autism. /.../ A lot of my issues became more manageable once I realized I had autism."

"I am very sad I wasn't diagnosed earlier."

"It took a long time for anyone to recognize the problems I have, since I compensate a lot. No one realized until I told my therapist and the doctor that I myself suspected I had autism."

 

To summarize, our small pilot study, together with voices on social media and other venues support that autistic women need more attention, help and understanding.

We only studied adults, so it is possible that the next generation of females is already having a slightly better experience. (It will be at least a year before I get the opportunity to talk to younger autistic girls.) Regardless, we are still hampered by a paucity of knowledge about female autism, and there may be many undiagnosed adults out there.

 

What can we do?

As you know, we do outreach and neuroscience, and spread the word (please keep sharing your stories!). Some of our respondents suggested that autism could be screened for at an early age, and the screens could be better targeted to identify women. I know the autism field is indeed moving in that direction. Many adult women are finding self-acceptance and community support on venues like Facebook, where closed groups exist that only accept autistic women. In fact, our participants have sometimes mentioned such venues as "life-savers".

Anyway, we'll keep working on this. More posts are in preparation on other aspects of the results from our questionnaires, and we are planning to put out a questionnaire about specific topics related to pregnancy, birth and/or child rearing.

Sign up here if you would like email notifications when a study comes out (a few times a year).