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My Research: Healthcare being Neurodivergent

As a neurodivergent person with some physical health issues, I have spent a great amount of my life in hospital, I can say that my experience has been mixed.  As a child, I had a few inappropriate and unprofessional remarks made about my acid reflux by doctors (for example, being told by a GP that at least by being sick regularly I was losing weight and stating that I had an eating disorder which was not true) and as a young adult GPs continuously not listening to me when I asked to have an autism assessment. It wasn’t until I was 20, I visited my university’s student support service to discuss struggling to make friends with my housemates and classmates and that I thought I may be autistic. The staff member listened to me and a referral was made. Once the autism assessment was over, the psychologist diagnosed with a nonverbal learning disability (NVLD). Even though my diagnosis has been in my medical file for the last 12 years, I am still sometimes referred to as autistic and I tirelessly need to explain I was tested for autism, but I do not have it.


One in three people who have a learning disability are also autistic. Around half of all people with a learning disability also have epilepsy. Many people may also have other mental health conditions such as depression, anxiety, self-harming, eating difficulties, or self-stimulating behaviours such as body rocking.’- Autistica


The Autistica article states that it is fairly common for some autistic people to have learning difficulties/disabilities, but they are separate conditions and should not be presumed to be the same condition.  The article also states there are genetic differences between autism and learning disabilities.


To go into further detail on this issue, HealthyPlace have written an article regarding the similarities and differences between learning disabilities/difficulties and autism.


Children with autism and those with a learning disability share some common features. These symptoms are common to both: Sensory processing issues (needing to avoid or seek sensory input)


Trouble with social skills. Prone to meltdowns. Communication issues, including difficulty with words. Difficulty recognizing others’ feelings. Problems with executive functions (organizing, problem-solving, self-regulating emotions and behaviors, etc.) Lack of coordination.  Not all symptoms are shared between learning disabilities and autism. Perhaps one of the best reasons why autism is not a learning disability is not the “what”—not a list of similar and different symptoms—but the “how.” For kids with learning disabilities, their symptoms mostly (but not completely) affect their specific area of disability. Children who have autism feel the effects of the disorder more globally and evenly rather than attached to an area of learning. Autism isn’t a learning disorder. Yet both disorders can significantly affect a child’s life, and kids with either (or both) disorder can be supported and helped. Arm yourself with knowledge about the disorders and spend time with your child to observe their characteristics.’- HealthyPlace


As my nonverbal learning disability does share similarities to autism, I do understand why some healthcare professionals believe my learning disability is autism as my learning disability affects my social skills as social and communication difficulties are common traits of autism. However, it is not the patient’s job to educate the healthcare professional on how your disability affects you and how it is different from other similar and comorbid disabilities.


However, I have met a lot of fantastic and very helpful NHS staff who have made me feel comfortable, been very friendly and made sure that I received the care that I need.  A recent example I can give is a member of staff approaching me, asking if I needed help when I was a bit lost and looked confused trying to navigate around the hospital. My mum usually comes with me to my hospital appointments for general support. My mum asks the doctor questions that I may be too anxious to ask. My mum is also there to help me understand what the doctor has said and what the next steps are.


I am lucky to still have my mum around to support me with my healthcare. Unfortunately, my mum will not always be able to support me. Many neurodivergent people do not have support when it comes to an escort attending appointments and/or making decisions regarding their care.  I am aware that most NHS trusts have language interpreters for appointments, I believe the same should be for neurodivergent people who need that extra support for appointments. The Health Passport is used to show NHS appointments what your needs are which is a great idea, but I think these details should be on file and read and understood by NHS staff before attending an appointment.


I spoke with A, a mum of three who has autism and ADHD regarding the positive and negative experiences she’s had as neurodivergent patient,

 

Accessing the NHS as a user with ADHD and autism has been both encouraging at times as well as disappointing. While the individual staff I encounter are friendly, helpful and attempt to accommodate, staff members are also usually unaware of how to speak to or accommodate ‘high functioning’ individuals with autism. This has led to difficulties in expressing how my disabilities affect me on an individual level and advocating for myself unnecessarily at times. Additionally, accessing service post-diagnosis is a postcode lottery. I have lived in an area where there are no local services at all and later moved to an area with these services but was placed on a waiting list as a new user thus I am still waiting to access these services many years after my diagnosis’.

 

S goes on to state that NHS dentists are easier for her to visit and navigate as they allow her to wear headphones during appointments and dim the lights when/where necessary.  S’s experience is similar to mine in that NHS staff have usually been friendly and helpful, there is a high level of frequency where our disabilities are fully not understood and accommodated for.

 

In recent years, I feel like the use of technology has been very beneficial for some neurodivergent people. Nowadays, appointment reminders are sent via e-mail and text message rather than by telephone, you can sometimes book appointments and sometimes pick your own appointment using the GP surgery’s website/app. The option to pick an appointment date and time is very beneficial to neurodivergent people as busy appointment times with lots of people can be triggering. Picking an appointment time where you feel a lot more comfortable and safe means more neurodivergent people will visit their GP rather than suffer in silence.

 

A study titled ‘Barriers to healthcare and self-reported adverse outcomes for autistic adults: a cross-sectional study’ by Mary Doherty and her colleagues. The study consisted of 507 autistic people and 157 non autistic people filling out an online survey regarding their healthcare experiences.  The results concluded-


Eighty per cent of autistic adults and 37% of non-autistic respondents reported difficulty visiting a general practitioner (GP). The highest-rated barriers by autistic adults were deciding if symptoms warrant a GP visit (72%), difficulty making appointments by telephone (62%), not feeling understood (56%), difficulty communicating with their doctor (53%) and the waiting room environment (51%). Autistic adults reported a preference for online or text-based appointment booking, facility to email in advance the reason for consultation, the first or last clinic appointment and a quiet place to wait.’

 

Mary Doherty colleagues concluded that healthcare staff need to understand autistic peoples’ perspectives, communication needs and sensory needs and they are just as vital as wheelchair ramps for access.

 

I can conclude that yes, the use of technology has helped a lot of neurodivergent people make their needed appointments and are more likely to attend their appointments if they can have a quiet appointment time and somewhere quiet to wait. S and I have both stated we have met some really friendly staff, but our needs are not fully understood and accommodated- S needs the use of headphones and dimmed lights and I need the use of headphones sometimes and information to be provided for me written down rather than just told verbally as I cannot always take in verbal information, especially when anxious. I need for all NHS staff to take into account I have a learning disability instead of ignoring it or assuming I am autistic. I am pleased of the positives changes that have been made so far with technology but more needs to be done to make sure neurodivergent people attend their appointments and their needs are understood and met.

 

By Alexandra Farnese


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