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.

Experiences of school in autism & ADHD

We asked adults with autism/ADHD and parents of children with autism/ADHD what's needed in school. This post describes some themes that appeared in the written responses from 78 people. This is a simplified translation of the original Swedish post.  

Autistic people: For purely editorial reasons, person-first language is occasionally used in this post. It's because we write about both autism and ADHD, and identity-first language can't be used for ADHD (as far as we know!). We hope you understand!  

 
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--- Author: Kajsa Igelström ---

1. See me

An thunderous "PLEASE SEE ME!" echoed throughout the responses. It's incredibly important to be accepted as a unique individual, and feel that you're okay just the way you are. 

"Quiet girls" and others who don't make much noise in the classroom are especially vulnerable. Girls who don't act out can get delayed diagnosis of both autism and ADHD. One suggestion from participants was that teachers could try to verify that quiet children have understood the instructions. Another suggestion was to actively look for kids who internalize stress, and try to understand what's going on. Simply asking the child how they're doing can be a first step in many cases.  

Some participants said that they wished that focus could be moved away from superficial behavioral issues and directed at the underlying problems. A feeling of guilt had followed several participants all the way into adulthood. Sadly, some parents indicated that this is still a problem - that they and the child were blamed for the child's challenges. Adults said that some factors that would have helped them were an early diagnosis, and in some cases ADHD medication.

Parents also wished they could be listened to and seen as a potential source of knowledge, instead of being regarded as "annoying parents". So, in summary, the "annoying kids" may be trying to express their needs, and "annoying parents" may be a valuable resource. And the quiet, frightened children may have things to say.
 

2. We're all unique

Several adults with diagnoses discussed the negative impact of the narrow expectations of what "normal function" means, and of social norms of how boys and girls should behave. Adults wished that their unique behaviors or uneven performance profiles would have been met with acceptance. 

Some kids wanted to be alone between classes and didn't appreciate teachers' attempts to help them become socially included. Others desperately wanted to interact with their classmates but got to sit in a separate room to reduce sensory inputs. Some did best in special schools or small "Asperger classes" (the latter is probably a Swedish thing), and others were happiest in a mainstream school. Both unusually talented kids and those with greater academic challenges wanted to have their needs met in terms of stimulation, encouragement and adaptations. Schools that in some way focused on individual qualities were praised by parents, but getting access to them had in several cases required relocation of the whole family to a new town.

We can only speculate which factors make certain children do better in certain schools. We understand that chronic stress is a huge problem for teachers, and that a lack of resources can cause feelings of insufficiency. Our guess is that a complicated combination of teachers' well-being, work environment, and education, the school's resources and environment, and the communication between parents and teachers, all contribute to whether or not children with autism/ADHD perform well and feel safe and happy in school. 
 

3. Give me hope

Several adults said that they had been told by teachers that they had no future unless they graduated. We heard stories about how this had resulted in a fundamental feeling of hopelessness, or an unhealthy pressure to perform. Even if there are good intentions behind such comments, it's important to realize that the effect can be destructive, especially for children with a "literal" thinking style. 

When you're a kid, it feels like school represents reality. The concept to hang in there until you emerge on the other side can be difficult to grasp, especially when there are challenges with abstract thinking or attentional function. To not be challenged, to be too challenged, to be bullied, to feel invisible... All experiences at this age contribute majorly to the child's experience of reality, as the developing brain is extremely plastic and receptive. 

Participants stressed how incredibly important is is for children to be encouraged in different ways, and to strengthen the good qualities  - academic or personal. See the strengths and strengthen them. See the weaknesses and stimulate development. 
 

4. Give me peace and quiet

Many individuals described the school years as a phase of constant stress and anxiety. Especially when adolescence approached, depressions, sleep disorders, and other manifestations of stress started to emerge. We heard similar stories from parents. It can become a vicious circle. The stress makes school harder, and the challenges at school increase the stress.

When your brain is different, school can be extremely draining. It is not just the school work that requires energy, it's almost all components of the day. The background noise, the breaks between classes, the lunch situation, not knowing what'll happen next... Even going to the bathroom can be stressful for some kids. In addition to being bullied, many kids had motor problems (a common symptom in autism and ADHD). This made physical education classes and anything that required hand coordination (e.g. writing) difficult and extra stressful. 

In addition to environmental adaptions like minimizing sensory inputs, participants suggested shorter lessons, more frequent breaks, and shorter days. Exhaustion caused by the demands at school was a common topic, and parents even described burnout in their children. 
 

5. Give me clarity and predictability

This topic was brought up by the majority of both adults with diagnoses and parents, and it was relevant in both autism and ADHD. It's not particularly surprising, but the needs were not satisfied in many cases. 

Detail-oriented thinking, concentration difficulties, and problems with unpredictable events are some of the challenges that cause an increased need for clarity. Breaks and physical education classes were mentioned as especially challenging situations due to fuzzy rules and undefined expectations for how to behave. 

The participant suggested specific solutions, such as preparation before any deviation from the usual timetable, having a detailed and clear timetable, and implementing a greater degree of feedback from teachers about how well the child has understood the instructions. Autistic individuals often found instructions and questions very unclear, and parents described stressful situations when homework had to be deciphered at home. A need for step-by-step instructions and in many cases a preference for written information were mentioned, especially by adults with own diagnoses. 

Improved continuity was suggested by some, in particular by having their own bench in the classroom, a home classroom and the same teachers. Further, there was a need for more reliable handover between teachers/schools whenever the child switched grades or teachers. Parents experienced that everything fell apart whenever the child's context changed. 
 

6. Use existing knowledge

Finally, it was interesting to see how much weight was put on whether one had been lucky or unlucky. The fact that changing schools can save a child's wellbeing and performance shows that existing knowledge is not always being used, or that it is not spread to all schools and teachers. It is important to examine that phenomenon, because in theory there is a solution. How can we improve the use of existing knowledge in all schools? It is also true that even the experts don't understand the huge variability and how we can help all kids to get the support they need at school. There is clearly much work to be done! 
 

5 ADHD-Doubters You Might Encounter in College

--- Maggie Pecsok ---

 
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Some people just do not understand the concept of neurodevelopmental conditions. To be fair, I’m diagnosed with one, and have been studying them for three years, yet I still find them hard to wrap my head around. It still hurts, though, to feel misunderstood.

Here are five hyperbolized archetypes of “ADHD-Doubters” that you might encounter in college. They are conglomerations, exaggerations, and expansions of my personal experiences.

 

1. The Ignorant Friend

The most common doubter you will encounter. Your diagnosis does not make sense to your Ignorant Friend. Maybe you were acquaintances for a long time before he eventually found out that you have ADHD, and his picture of ADHD does not fit with his perception of you. He asks you some offensive questions about it – questions which make it clear that he thinks your diagnosis is merely an exaggerated reaction to “being a kid”. You’re disappointed, but you understand that he can’t see into your head. Depending on the friendship, you either arrange a heart-to-heart and try to get him to understand, or else accept the limitations of the friendship and never bring up ADHD again.

 

2. The Condescending Significant Other

A painful manifestation of ADHD doubt is when another person attributes ADHD symptoms to your personal character. In the context of romantic relationships (or even close friendships), this misconception can be toxic. Beware of the Significant Other who views you as someone to be “taken care of”. If you detect this sentiment, a serious conversation is needed. If the conversation doesn’t stick, evacuate immediately! Few things are more disempowering than a partner who views you as incompetent.

 

3. The Competitor

One night, you’ve invited friends over for a small party, and the conversations get personal. When you share that you take medication for your attention deficit, she suddenly oozes bitter jealousy. This ADHD-Doubter wishes she could take Adderall because she is trying to get into law school and needs to maintain her GPA. She seems to have concluded that since you are not visibly or catastrophically “disabled”, your are gaming the system by taking Adderall. You shrug, “Well, the doctor says I need it,” then quickly change the subject.

 

4. The Puritan Roommate

Freshman year, you are crammed into a dorm room the Dursleys would have reserved for Harry Potter. It’s a new space, new routine, new everything, and you find it disorienting. Your rigid-minded roommate believes that efficient adaptation to college simply requires self-discipline and hard work. In many ways, you envy him, and for many reasons, he resents you. The main point of tension: everything on his side of the room is at a right angle, while you have a more, um, “intuitive” system. Not wanting to be disrespectful (or perceived as such), you work to maintain a tidy living space. You apologize when you make mistakes. You might stay friends with the Puritan but you do not room together next year.

 

5. The Benevolent Professor

When having a deep talk with your favorite Professor about your future, you mention that your experiences navigating life with ADHD have really shaped you as a person. She is incredulous. “You have ADD? But you’re engaged during class.” You explain that you’ve learned how to compensate. Plus, you love her class, so it’s easier to pay attention in it. From her praise about “growing up”, “overcoming ADHD”, or “getting through it”, you realize she does not understand the idea that ADHD will always be a part of you. 

 

Navigating college life with ADHD is going to lead to some misunderstandings. Sometimes you meet people whose brains don’t understand your brain. When this happens, it can hurt to feel misunderstood. But having an extraordinary brain is so worth it.

© Maggie Pecsok, 2017