Negotiating Doctor’s, Professionals, Red Tape and Invisible Difference
Most visits to professionals are anxiety inducing, none more so than for someone suspected of being on the autism spectrum or another invisible difference. Many seeking help, support, answers and assessments are constantly met by a brick wall of unhelpfulness and frustration. I cannot emphasise that enough. You could be the first or perhaps the 41st professional many find themselves in front of, please remember that.
This article is intended for professionals but written by those that have suffered many injuries just from hitting those very painful brick walls. How do ‘we’ feel walking in to a stranger’s surgery/clinical setting? How are we able to ‘describe’ how we feel when feelings are so jumbled most of the time?
Ask many with invisible neurological difference how they feel and you may be met by a blank stare (less painful than a brick wall!). The reason we have made a huge effort to come to your surgery is because we need help. None of us like spending our time trawling from one professional to another in search of answers but most importantly our identity, although some professionals really believe we get a ‘kick’ out of it. Nothing could be further from the truth.
These are some of the obstacles many of us may have encountered on our way to your consulting room. The list beneath is only a guide and may not affect everyone although some of the points will affect everyone. It could be that a desperate parent constantly encountering education problems is seeking your advice or it could be an adult who for years has wondered what makes them different. The reasons are endless and will all be unique. Let's look at the realities........
- The phone call to the surgery itself can be as difficult as summiting Everest. Often GP practices employ receptionists as guards to the doctors, despite pleading for an appointment many get put off at the first hurdle which actually has provoked a meltdown in itself (please see article on Tsunami)
- Arriving at the surgery – bus, car, train? Perhaps the journey was fraught with difficulties and delays and changes in systems have caused meltdowns? Sensory differences may also impact a seemingly simple journey in many ways.
- Walking through the official door – to many this is a major obstacle in itself. Opening the door to a room full of people? Different smells with perhaps overhead fluorescent lights. Noises and unfamiliar settings can easily overwhelm someone suspected of being on the autism spectrum.
- Negotiating the receptionist is often dreaded by many, no more so than someone with invisible difference. Why do many of the people employed to give a reassuring ‘welcome’ within the surgery/clinical setting actually result in doctor/receptionist phobia?
- Calling someone’s name to a specific room with perhaps a stranger behind the door, making the walk to the room and opening the door to the consulting room could and often does elevate anxiety to a height whereby the patient is either rendered speechless or unable to communicate their needs, issues or feelings. How are WE meant to know what the problem is? How are we meant to identify what we need too help us OR to communicate how we feel? That’s why we are coming to YOU.
- Most people including those with invisible difference are aware that a doctor’s time is limited and precious. Some doctors will show their discontent making the patient feel extremely uncomfortable. Those facts alone exacerbate anxiety as many feel they are ‘troubling’ the doctor and feel they need to apologise.
- Leaving the clinical setting is often more traumatic than the arrival. Many leave unsatisfied, frustrated and angry that they-
- Have been ‘fobbed’ off, feeling as though no one has listened or believed them.
- Not been able to communicate effectively
- Troubled the doctor unnecessarily
- Put off as no answers or help provided
- Scared and isolated.
- Referred to yet another department and have to repeat themselves yet again…
- Arriving home after a similar experience hi lighted above will leave someone with invisible difference feeling exhausted and emotionally drained. More often or not they will feel confused and frustrated, these feelings may last for hours, day’s or even weeks. The repercussions and consequences of appointments are very often a step too far for people with invisible difference or for parents seeking answers in relation to their children.
BLINNK and you may miss it!
What can YOU do to help people with invisible difference?
1. BELIEF! People coming to your door with questions and concerns surrounding invisible difference have not taken this journey lightly. We are not lying and we would prefer not to have to come and see you. Please don’t flatter yourself that we are desperate to see you! Understand the huge effort it has taken just to get to your desk.
2. LISTEN! Although some people with invisible difference may have trouble communicating, many do communicate their needs in different ways. Be adept at reading body language and please be patient. Don’t overwhelm us with questions and instructions, bite sized information is best for many. Understanding those with neurological difference is not rocket science, it’s common sense.
3. INTEREST! We can’t all be interested in everything or like everyone; we understand that; however there is nothing more off putting to a patient with invisible difference than a brusque manner and disinterest. Please try and understand, this is far more difficult for those with invisible neurological difference than you.
4. NEUROLOGICAL NAIEVITY! Please before you judge RE TRAIN, educate yourself in invisible difference, no one is asking you to be an expert but just learn enough to understand. Those that have to live it are the real experts. At the very least REFER to those that are trained experts.
5. KINDNESS! Cost’s nothing and means the world.
What may be a 10minute/hour appointment for you may feel like a lifetime for someone with invisible difference. Often these appointments induce fear, stress, anxiety and meltdowns. This is a symptom of the underlying difference and not always a psychiatric condition. For you the appointment may have felt as though it went well however for your clients it could feel disastrous.
Parents of children looking for answers are only doing so because they are struggling to cope. Before you hit the ‘red phone’ for Social Services please take a minute to think about what you could potentially be doing. Invisible neurological difference is often mistaken for bad parenting and only too often desperate parents merely seeking your opinion and advice because they have nowhere else to go, get targeted by the very people deemed to be able to help them. Although occasionally Social Services may prove useful, in the main many parents who seek a diagnosis or assessment for invisible neurological difference find the spotlight suddenly on them, not always for the right reasons.
The message is simple and should be a mantra for all professionals when advising someone on invisible neurological difference.
Tender Loving Care for Invisible Neurological Difference Everywher