I was late to be diagnosed but I have always had struggles with what some may just class as everyday things, like if I was diagnosed when I was at school I would have hopefully of had the support needed to make things easier than they were. Looking back at all my experiences so far there are many things I wish people knew or know now, I have recently experienced difficulties when visiting my GP so thought I would start with what I wish the Doctors and staff new.
Everybody is different so I can not claim I am speaking on behalf of every autistic person but there will be some similarities to what we would all like them to know or take into consideration. From my personal view there are lots of things I wish all members of staff new or at least had some understanding, I dont expect everybody to be an expert as there is so much to know but not only would it be easier for me and other autistic individuals it would help the staff.
Diagnosis or not
I am making an assumption that there are many people who have not yet been diagnosed but GP’s see a variety of people and must have suspicions about people who have not been diagnosed. When my GP said they felt I was autistic she must have suspected for a while as I cant see this idea pop into their head out of the blue. It was not handled very well for me as no explanation was given, they sent me for tests and seem to clam up and refuse to discuss it with me. If they suspected I had a broken leg and I wanted them to explain why and what this meant moving forward they would go through this with me, so why not when it comes to an autism diagnosis?.
I may have just been unlucky and have inconsiderate GP but if that is the case I wont be the only person who has not had the support at the same surgery. I am convinced that I would have found things easier if I was given an explanation of what autism is and what it was I have said / done that has made them believe I am autistic. Since my diagnosis I have changed, I am not sure why but it is like I could previously hide my quirks but however hard I try my difficulties seem to be a lot more obvious.
I firmly believe that the stress and anxiety that I went through could have been alleviated If my Gp had taken the time to explain things to me, I also think that they would have saved their time and their colleagues time as I probably wouldn’t have needed as many appointments.
Process of making an appointment
I can only speak for myself but my anxiety increases prior to visiting the surgery and it is because of how appointments are made. Over the years the process has kept changing to make things easier for the surgery and the patient, 99% of the time it will be an improvement but too many changes to what I know can be confusing and add more stress to the process. Obviously as a child any appointments were made by an adult but once this was in my hands I understood the process of calling and arranging a time, this has become quite difficult which seems to be the same for everybody. I wont claim to understand the ins and outs of all these changes but it seems there is an increase in demand and less funding so not enough drs and nurses, this will be frustrating for everybody not just the patients. Due to the demand receptionists seem to have taken on a triage type role to direct people to right person for the correct treatment and free up more appointments, on paper this does seem to make sense but in reality it does cause issues and gives receptionists a bad name.
It takes a Dr 7 years to train and qualify as a doctor and a receptionist 3 weeks to think they are
Yes that is just a joke but I am sure it annoys receptionists and it is what people are thinking. I am sure most receptionists are nice and get a bad reputation which is not justified but there are some who seem to think they are better than they are. The negative to this triage process is that unfortunately some people could become seriously ill and potential die because they haven’t felt comfortable discussing symptoms with the receptionist. At my surgery the majority seem okay but I have difficulty explaining things, when I feel people are not understanding me I get anxious and over time become really frustrated. This happens when I am physically with people but on the phone it is a lot harder for me to be understood. If I am in the surgery and the dr says I have to make another appointment I do this face to face and 9/10 times it goes smoothly, over the phone not so easy.
Due to the communication issues the call to book an appointment causes me to become anxious before I have even picked up the phone. If I know that I will need an appointment I will play the phone call over and over in my head based on what I think will be said, the problem with this is that the call never goes the way I think and I am fairly worked up by the time I call.
All of this is before an appointment has been made, there are a few things that I think could be Done to ease all this, they are not perfect solutions but could help people that struggle with communication.
- Have a note on the record so that whoever answers is alerted to the autism diagnosis and could maybe pass the call to somebody who has experience with working with individuals who have communication issues, or the person answering takes things slower and gives more time.
- An option to email in providing the required information is on the email. I would find this easier as they would only need my name and date of birth to identify me, there could be then set things the surgery require. An example would be if the appointment needed is urgent, who you would like to see and roughly what times would suit. This may not be perfect as deciding if you think something is urgent or not in its self could cause anxiety worrying about what is classed as urgent, but it could be agreed that the email must contain if you need the appointment in a week or 2 or if it could wait a bit longer. The email also gives opportunity for the patient to add other info such as why you would like to see Dr or nurse or a note you wish the dr or nurse new before you had the appointment. This email could then just have a reply saying when the appointment has been made for, a reply could come within 24/48 hours it will remove some of the anxiety of waiting for the response.
Consideration for when would be a good time for somebody with autism to attend would be beneficial, an example would be when the surgery is less busy and doesn’t have say lots of children crying and running around. My senses seem to be in overdrive and every noise, smell and flickering light seems to be aimed at me. One thing that I have noticed is the lights in my doctors surgery don’t always seem to be as bright, I assume they are aways the same but I see them differently.
Some appointments maybe anxiety inducing for people without autism but I find all appointments quite stressful. Prior to my diagnosis I had seen various doctors over the years, didn’t go that often but more than some my age, over the last 10ish years though I had found a Dr that seemed to understand me. Obviously at this point I didnt have a diagnosis but the doctor seemed to listen to what I was saying and if I was prescribed something it always worked. In the same surgery a previous Dr had messed up my medication, was rude and due to him not listening I nearly lost my job as he seemed more interested in giving me a sick note instead of getting me better. This had a big impact on my day to day life not just at the Drs so I took my dad with me to an appointment to see if he could help me get somewhere, it wasn’t successful the Dr still didn’t help. Due to this experience it has meant I am more concerned about going to the surgery but when I found a Dr who listened gave me the correct medication I always booked in with her. I never told her that I was just booking with her but I always made sure if I needed an appointment It was her I booked with and if she was on leave I would wait, looking back that could actually of been quite dangerous waiting but I felt safe and had a lot of trust for this Dr.
Consistency really does help, I have since learnt this is due to been autistic so this is something a Dr surgery should consider for all patients with autism. It would also be useful that there is a 2nd Dr that could be introduced to the patient for times the preferred Dr is not available. After it was suggested I was autistic I was given a new Dr against my wishes which caused a lot of distress and I think this should really have been avoided and should be considered for all autistic patients or patients the Dr suspects has autism. One thing I haven’t been able to understand is that it is really taking some time for me to get used to this Dr, this is no reflection on her as she is really nice but she doesn’t seem to understand me. Prior to my diagnosis I would turn up to my appointment get what I needed and most of the time I was just in and out, it wasn’t perfect even though I trusted her I didn’t want to take up their time and never said if I didn’t understand. With this new Dr I don’t understand or the Dr doesn’t understand me on every appointment, I am not sure what’s changed other than I am trying to stand up for myself more and question things.
If the surgery knew or took the time to understand more about autism I think it will help the patients and the surgery. Once I have an appointment booked I am then anxious and will be constantly thinking about the appointment, this could be anything from what time I will need to set off to prevent been late, how busy will the waiting room be, will they have the lights on full power ( Lights are a strange one as sometimes it is so bright in there I just want to leave) and then obviously what will I say and how will the Dr respond to me during the appointment. If the wait is a week or 2 since the appointment was made I will be very anxious but may not be showing it. Each day I will be building up all the worst case scenarios, these are not about any medical issues it is more about what It will be like when I arrive.
This situation could be made easier if the appointment is made at a quieter time of day, there is somewhere to wait without been amongst lots of others and if the Dr is running on time. I understand that is is not always possible to be running to time and I can normally cope with this if while I am waiting it is quiet, not too bright and I can fade away in a corner. One of the things my surgery does that is really good is the iPad type check in, as you register your attendance it will tell you if your Dr or nurse Is running behind and by how long. Using this system means that I dont have to stay in the surgery I can go wait outside and come in when my new time will be.
Unfortunately for the GP or the nurse I will have been in the waiting room or corridor getting more and more nervous so when I get in the room I am not as relaxed as I could have been. Having the same GP or nurse will help as there would hopefully have a decent understanding. One of the things I have alway been conscious of is taking up time so know I have to rush but if the nurse or GP comes across calmer and more relaxed it would help me feel calm and relaxed. The GP that I see now is a good doctor but she doesn’t seem to understand me and some of her actions give me the impression she has no idea how individuals with autism think or feel, sometimes I will say or do something and she sort of laughs at me and looks as if I am some kind of alien that is reacting in a way that is just stupid. I cant speak for others but I only say and do things based on previous experiences so it should be obvious why I am saying / doing certain things.
Consistency is key to help a consultation run smoothly for both parties, anything different can distract from the real reason for the appointment. Any distractions from the conversation can change the outcome and could result in the medical professional not understanding the real reason for the appointment and things getting missed. I remember once I was in with a nurse and was been asked a few questions when I suddenly got distracted and was struggling to concentrate, the nurse realised before I did that the window was wide open and their was lots of shouting going on outside. She asked if I would like the window shutting, obviously not wanting to cause a fuss I said no, but I then realised why I was getting distracted. I felt the nurse was very aware and it made a nice change.
Dr’s have limited time during the appointment so they don’t like it when people come in with lists and if you are to put yourself in their shoes they have a point, also a list could be dangerous especially if you spend all the appointment discussing a small rash and just as you get up to leave you mention you have chest pains. Whilst everybody with autism isn’t exactly the same one of the traits is having set ways and needing to know / fully understand things in detail, this conflicts what the Dr’s want. I have a list when I go but it isn’t really a list off things wrong with me as usually one issue has many symptoms or just prompts to remind me what to say. Every time I leave the Drs I have not said or asked everything I want which is really frustrating, this is not because I have lots to say I get distracted by everything and I just forget. Often I have gone in and the Dr has given me a new medicine, I may then mention this when at home and I will be asked what the doctor is expecting to achieve by doing this or how long will you need it for and I have not idea. I would like to know the answers to these questions but am always worried I will be wasting their time, however it seems non autistic people would have these answers and wouldn’t have worried about asking.
Miss understanding can cause lots of confusion and can make things stressful, I imagine it could also be frustrating for the doctor. If doctors could take into consideration who they are speaking to and adapt how they explain things. Everyone has a different level of ability but taking into consideration that I would have been nervous in reception, distracted by the noise and lighting and that is before I see them. Once in the room with the doctor I have to try and focus quickly and remember what I want to say, answer questions that I may not have been expecting, watch the doctor to try and gage what they are saying. Doctors will often be looking at the computer and this is something that I gravitate towards, I cant read the screen so have no idea why I stare at it but this is just another distraction.
Like many people with autism I struggle to explain things sometimes and am conscious of this which makes me get embarrassed. Unfortunately this leads to me not actually mentioning the real reason I am there, In the past I have had a doctor that seemed to know this and managed to guess. This is something I shouldn’t expect as I am sure mind reading is not taught at medical school but If a doctor sees your trying to say something it would really help if they took the lead on this and help get the correct words out.
Whilst not every individual with autism is the same having the ability to have an early appointment or a late appointment should help as it will probably be quiet. My preference would be to have a later appointment, it means if I am at work I dont have to leave in the middle of the day and just leave early. I also like late appointments wherever I am going as it means I can go straight home after which really helps as it means I can take some time out on my own. Many years ago before diagnosis I has a dental appointment mid morning which didnt go too well, it then lead to me going back into work and overreacting to something. This was totally out of character and my manager wasn’t really sure what was wrong and neither did I but knowing what I know now I had a meltdown. If the appointment had been at the end of the day this would not have happened as I would have been able to go home.
If tests, medication prescribed or referrals done this needs to be explained with what the next steps are. I have lost count of the amount of times I have left an appointment where I have been referred for something but dont know why, when I will hear, where I will go and what to expect when I get there. Not knowing can cause anxiety as not knowing what to expect and when to expect causes uncertainty in a world that’s full of routine. Also if you promise to do something it really needs to be followed through, I think this should go for everybody but I find broken promises extremely difficult to deal with. NT’s seem to break promises all the time without thinking of the consequences but it seems NT’s who have been promised something dont seem to feel that let down. If I promise to do something I always do it without fail, if I am asked to do something that I know I will find hard to follow through I never say promise.
Most people understand things go wrong and have to change but like many autistic individuals I find change difficult, it may seem trivial to the doctor but letting me know what they said / agreed will need to change makes a massive difference. Managing expectations makes a massive difference to how I feel and deal with change
Patience, consistency, understanding and explain