Many people on the autism spectrum find a trip to the GP’s extremely traumatic. There could be many hurdles for that person to negotiate before they even arrive in your surgery.
Meltdown’s and shutdowns are to many triggered by fear and sensory difference. Many people on the autism spectrum are fearful of professionals and those in authority. Some find that any communication skills they do have simply fly out of the window. Just the thought of making an appointment is enough to induce a meltdown so please consider the effort and energy that will be required to eventually sit in front of you.
So what do you do if your patient has a meltdown in your surgery? Do you understand meltdowns? Do you know how to respond and how to keep your patient safe? Some doctors perceive meltdowns as ‘psychotic episodes’ and take totally disproportionate action as a result. Some people on the autism spectrum have literally been transferred from the GP surgery straight into a mental health institution under a Mental Health Section. Sometimes even the police have had to be called. In England 2008/2009 there was one physical assault for every 61 primary care staff making a total of 3,472. How many of those were as a result of a misinterpreted meltdown and could have been avoided?
By understanding how to make your surgery ‘autism friendly’ you will reduce anxiety and fear in patients who may have an invisible neurodevelopmental condition. Who do you have in your practice that champions autism? Let’s look at the first steps to seeing a GP in England 2014 and the impact and consequences this has on someone on the autism spectrum. Meltdown’s and shutdowns can often be induced at the very first stages of making contact making the rest of the process extremely challenging.
Most appointments are still made on the telephone. Many people on the autism spectrum don’t choose to communicate on the telephone for many reasons. Misunderstandings are common and understanding ‘meaning’ over a phone for some is difficult. Do you offer text appointments or email bookings? Do you offer any of your patients a choice in how they make appointments?
All anyone on the autism spectrum wishes to do when booking an appointment is to ensure they see the correct person at the correct time with as little hassle as possible. A seemingly innocent comment from a ‘Jobs worth’ receptionist which means nothing to them can be taken to heart by someone on the spectrum making the task almost impossible. Inquisitions and obstruction will simply lead to meltdowns and a feeling of injustice.
Whether it is a parent trying to book an appointment for a child or themselves, there is an awful lot for us to think about when making the appointment. In fact the arranging and getting there can be more traumatic than the actual appointment.
Some surgeries have 0844 telephone numbers which alone can send someone into a meltdown as they rush in order to minimise the cost.
GP receptionist – Many GP receptionists and office staff are not autism ‘friendly’ and can pose a huge problem for many on the spectrum when trying to access a convenient appointment. For some just trying to negotiate a phone with an abrupt receptionist can make the difference between staying at home and asking for help. An appointment with a requested doctor that a patient has to wait for 3weeks for is unacceptable. Many receptionists are seen to ‘protect’ the GP and making the patient feel like an unwanted guest at a wedding. Some receptionists appear to turn into a guard dog once they find themselves behind that powerful sliding window that separates patient from professional.
GP availability – Most surgeries have multiple GP’s with many locums. Some GP’s operate multiple practice and aren’t always available. For many on the spectrum the thought of seeing an unfamiliar face or perhaps a doctor they have seen before and not got on with is a huge issue and will result in non-attendance or refusal. Refusal to allow someone on the spectrum to see a doctor of their choice can lead to traumatic meltdowns that are both unnecessary and a matter of huge injustice for the person on the spectrum.
Journey to surgery
People on the autism spectrum are naturally anxious and live their lives on a high state of alert. Routine and ritualistic ways are second nature for people on the spectrum. Public transport is difficult for many due to the constant overwhelming sensory issues that may impact on that person making them feel unsafe and even more nervous. For those that drive, concern with regards to ensuring they use a route that is familiar and safe to them at a time they can cope with. Many may bring someone with them just to reassure them and keep them safe. Is there parking near your surgery? Are you on a bus route?
No one person on the autism spectrum is the same. Some will arrive half an hour early for their appointment as they cannot cope with being late whilst others will arrive regularly late for appointments and get very upset when they are told it is too late and the doctor is too busy to see them. For some time keeping is extremely difficult and discretion is welcomed. For some their reply is that they are kept waiting for so long every time they visit the doctor they have learned to be late so it minimises waiting/meltdown time for them.
By now, just walking through the surgery door may be enough to trigger a meltdown or cause a panic attack. People on the autism spectrum can be affected by tiny changes to their environment. Many describe themselves as fine delicate and extremely sensitive barometers to life in general. How does your surgery smell? How bright are the lights in the waiting room? How are the seats set out? Is there a receptionist on duty who doesn’t have the nickname of ‘Jaws’ for nothing? Has the faithful disc system of booking in been changed (people with autism don’t cope with change well)? Is the doctor on time? Do we know who to expect to see or is it the nameless ‘clinician on duty’? How long will we have to wait? All these are questions that will undoubtedly run through the mind of someone on the autism spectrum. What can your surgery do to help people on the spectrum?
Waiting rooms can be very intimidating, sensory overwhelming places for many on the spectrum. All eyes are on the person that walks in to the room and for some reason many waiting rooms are like mini libraries with a shhh hushed voice policy and magazines that are 3yrs out of date. Chairs are often uncomfortable and being in an environment with many other people will send many into an even more anxious state. Some people on the spectrum may request a ‘quiet’ room away from the hustle and bustle of the main waiting area. Others may choose to wear out your floorboards or carpet by continually feeling the need to pace. Some may become so absorbed within their headphones full of music to keep them calm, they may miss the doctor calling their name!
Parents with children who are diagnosed or suspected of being on the autism spectrum may exhaust themselves as they constantly have to try and keep their child occupied, appropriate, calm and safe whilst waiting for a seemingly very long time. The odd box of broken toys and ripped cardboard books will not satisfy even the youngest child for long. Some youngsters may even find Mrs Jones in the corner who is clicking her false teeth a fascination and comment loudly on them embarrassing both Mrs Jones and their red faced parents.
Some GP’s surgeries use a ‘tannoy’ system to announce their readiness for the next patient. This sudden announcement of our name can feel quite embarrassing for many who simply wish a hole would materialise to swallow us up.
The walk to consulting room
By now anxiety levels may have reached such a pitch that any consultation with any doctor may prove difficult. People on the autism spectrum do not have the sharpest of short term memories so issues they desperately wish to discuss all of a sudden get forgotten and information is becoming muddled.
How is your consulting room furnished? Do you sit behind a big wooden desk looking very important and intimidating? Or is your chair at the side of your desk, making it more informal and relaxed? Is there a big clock making loud ticking noises that sound to a person with autism like a swarm of bees in their head? Is there an open window looking straight out onto a busy road which could easily distract a person with autism? Is it comfortable, quiet and calming? Are you calm? People on the autism spectrum quickly and accurately pick up on other people’s body language and tone of voice. If you are not relaxed please don’t expect your patients to be.
Are your autistic patients pacing the room unable to sit still? Perhaps they are jiggling their knee, playing with their keys or twiddling their hair? These are all signs of anxiety, watch your patient, and respect their differences. Please remember that patients in a high state of anxiety may forget to tell you what they came for.
Many on the spectrum fear the doctor for a number of reasons. If a person is diagnosed on the autism spectrum, it will have undoubtedly have been a long arduous diagnostic pathway that they will have had to endure. Many have been passed from one professional to another often visiting as many as 20 professionals to obtain their ‘identity’ and diagnosis. It is not a service user friendly pathway and many drop by the wayside exhausted unable to find anyone to help. Many are dismissed into mental health departments as there is no other place to go. For others it is simply ‘once bitten twice shy’ and a matter of trust.
For some simply being not listened to, not believed and even ‘laughed out of the surgery’ is not a great experience so rightly many feel anxious and as though they are a ‘problem’ patient. Many indeed even feel guilty at taking up the doctor’s time and deliberately try to rush their appointment. Others want to pour out their life histories and diversify at every given opportunity.
For those that are coming to your surgery seeking assessment for Autism Spectrum Condition it is their legal right to do so. The Autism Strategy clearly supports this and local authorities should now have their own autism strategy in place.
Please be assured that the pathway for diagnostic assessment for ASC is not something that is taken lightly by anyone. For someone to enter your surgery and ask for this has taken much though. If that person feels that they may be on the autism spectrum why is that so important? Please read down for the reasons.
Who in your area is the local clinical expert for ASC? Who will you signpost to? What is the procedure once the patient leaves your surgery? How long will this take? What happens next? Please find out as all these are questions that you may be asked. People on the autism spectrum are naturally inquisitive and need to prepare for the next stage. What happens to that patient if and when they are diagnosed? What then?
An already identified and diagnosed patient may come to you for help with any other medical issue of course. Will you need to refer them to another expert? Where and with whom? Does that expert understand the patient is autistic? Will it involve a hospital attendance? Will it involve an admission or investigation? Who can explain the procedure to your patient? Who will be at the hospital that understands autism? Who can go with that patient to keep them calm and safe?
Literal thinkers – many on the spectrum are literal thinkers. Simple throwaway comments such as ‘it will only take a minute’ are taken very seriously so. 10mins later you wonder why someone is having a meltdown! .
Leaving the surgery
How was your patient as they left the surgery? Did they hear everything you had to say? Did they remember to tell you everything? Perhaps when they intended to tell you about the pain in their hip that keeps them awake all night, they were smiling so didn’t communicate their true feelings or emotions? Perhaps they wanted to ask you for something to help them sleep but forgot. Perhaps they have left the surgery with many more worries than they came with and forgotten all they have been told ? Maybe they feel they didn’t use their time wisely and could kick themselves as they didn’t achieve what they wanted to.
Many on the spectrum find giving information, receiving information and remembering it very difficult. Most cannot take notes and listen at the same time which is why there are so many misunderstandings and lack of clarity. Do you ensure that your patient has understood what you have said and taken the right meaning?
Perhaps the wait to see you was so long that they have missed their lift? Maybe now its rush hour and nervous drivers will be dreading the journey home. How far is the chemist if they need a prescription filling out? How long will it take? What effects will the medication have? How will it be re ordered? Is there anyone approachable within the surgery to ask?
Advocacy and respect for choice
Families know their loved ones best, no one would argue with that. So why when someone on the autism spectrum is accompanied by a person they trust and feel safe with is that person ignored? So many times young people have arrived for an appointment with their parent. Yes so what that they are 19yrs old? Many youngsters and teenagers feel vulnerable in attending appointments on their own. Most prefer to have someone with them that can help them out when difficult questions are asked or meaning needs to be interpreted for them.
Whilst the law may state that someone over 18 is an adult and therefore deemed capable of independence, this is not always true for someone on the autism spectrum. Many young people who have relied on their parents to help them deal with professional appointments as a child feel no different when they pass the magic age of consent.
What can be seen by a doctor or professional as a dominating, controlling parent/carer who appears at constant loggerheads with professionals can also be seen by a person with autism as their safety net that will keep them safe and protect them when they feel out of their depth.
PARENTS AND FAMILY
Whilst some parents and families may be seen as passionately protecting their youngsters and seeking out the best for them, others may be seen as controlling and dominating parents who think they know best.
Often families of youngsters on the autism spectrum will know far more than experts or professionals. Many will research what makes their family different and others will take it one step further and seek academic training in the subject. For many it is a road of discovery as they realise that their youngsters are not the only ones in the family that are on the autism spectrum.
Some families will require the support of others such as social workers, youth workers and carers. Parents need praise and reassurance that they are not being targeted as a reason for their child’s challenging behaviour. Some families have learned to their detriment that involvement from Social Services has sadly meant also unwanted and often unnecessary intervention from Child Protection. Ignorance of ASC is still sadly prevalent within the professional circle.
Parents should always be listened to and respected. Many feel permanently ‘fobbed off’ by outdated un empathetic doctors who think ‘naughty children’ are a direct result of bad parenting. These views are both callous and heinous.
There are occasions whereby someone on the autism spectrum will not be able to make it to the surgery. Home visits can be intimidating and confusing for some people on the spectrum as they may perceive your visit as a ‘social event’ especially if you are their trusty GP of many years (would you like a cup of tea Doctor?). For others it can be hugely invasive as they struggle to answer even something as simple as a doorbell. If you are not known to your patients please always introduce yourself and explain all that you are doing. Emergencies can send someone on the autism spectrum into instant meltdown and panic.
When it all goes wrong
For some people with autism, the doctor’s surgery becomes a minefield and nothing ever seems to go right. For some the stress of the occasion can render them speechless or inappropriate, for others it can exhibit as over the top, loud and perhaps ‘challenging behaviour’. A meltdown is an often public display of distressing and volatile behaviour mainly caused by severe overwhelm in circumstances, environment or situation. For some the consequences can be dire and they can end up being removed from the surgery forever whilst for others it can be the most embarrassing event ever and they never get over it and return.
To a doctor a meltdown may be perceived as a ‘psychotic episode’ whilst to a police sergeant it may be seen as ‘arrest able threatening behaviour’, to a teacher it is seen as a ‘temper tantrum’ or ‘naughty child’. A meltdown is a very painful event both for those witnessing it and those experiencing it. Meltdowns can be spotted and avoided and all measures should be taken to ensure that meltdowns are not ignited within the practice when they could have been avoided.
A meltdown will rarely last for too long given the right handling. A meltdown is an extreme reaction to various varying stressors. Provoking a meltdown in a patient is a failure on the part of the surgery to cater for that person’s differences empathetically.
Enquire with local VO’s and hospital car drivers if there is a pickup service to help people with autism access the surgery.
Make an effort to learn about autism and the legal rights of people with autism.
Remember that it is not you who are the experts in autism, it is the families who live with it 24/7.
Advertise the fact that you wish for your practice to become an autism friendly practice that respects diversity and difference.