Published on 12, July, 2020
After what has Honestly been several years of recommendations This week I had my initial appointment for diagnosis with asd. During this appointment the Dr asked me about my repetitive behaviours such as my schedule, during this I tried to explain that because of my inconsistent university schedule and a difficult relationship with sleep that I do not have a schedule based strictly off of time e.g. waking up at 7:30 everyday but rather that I have a schedule based on the order of and how I do things in my day to day life. I also tried to go onto explain behaviours such as sticking to eating the same foods and using the same bowels and plates and glasses and such to eat with. Before I could do this my Dr cut me off and told me he was going to put that down as 'no repetitive behaviours' which I do not feel is the truth.
I would like to know if anyone feels this would be worth bringing up at my next appointment as I really do not want to misrepresent myself or be misrepresented during this whole process or even if I am just being completely incorrect in my own assessment of the situation. Thank you.
I realised, post factum.
Thank you, Bunny. I always forget to check when a thread was posted. I always assume it was started recently.
Just for info, the thread you've replied to is over 4 years old :)
[PS Sorry to the mods! I accidentally clicked on "more > report" rather than reply, as intended].
'I'm afraid that we are at the mercy of how well the clinicians dealing with us actually know their stuff, and are not either hopelessly out of date, or wedded to incorrect stereotypes. Getting competent clinicians is half the battle.'
This is absolutely correct, unfortunately. As I have just said in another thread, my autism assessment experience was dreadful:
Autistic Not Alien | My Autism Assessment
In the diagnostic manuals 'repetitive behaviour' is lumped in with 'restricted behaviour' (restricted interests), so in theory you only have to show one of these types of behaviour for a valid diagnosis. There is a subset of autistics, I am one, who have problems with time, a sort of time blindness. This has been tentatively linked to a defective 'biological clock'. I, and other autistics like me, therefore cannot have strict routines as we have a very slippery grasp of time, though we do not like change.
I'm afraid that we are at the mercy of how well the clinicians dealing with us actually know their stuff, and are not either hopelessly out of date, or wedded to incorrect stereotypes. Getting competent clinicians is half the battle.
Thanks aidie
good idea
After doing a bit of research I believe DSM5 has been updated to include sensory so the food one may come under repetitive behaviours as well based on my reading?
‘Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement)’
hyper is over - sensitive and hypo-reactive is under sensitive... so with me I am actually under sensitive with touch so I love hugs and pressure, but I am over sensitive to light and sound. So that might be another thing you want to have a think about as well!
I find with doctors they are jack of all trades master of none... you really have to spell this stuff out to them! good luck with your next appointment x
Hi, I think u r new so welcome to this forum :)
Thank you for this reply it has been very helpful! I was unaware that physical repetitive behaviours were considered a part of this category were dismissed and things such as a strong dislike of change or special interests were respectively discussed as their own category/ only touched on in passing. I will look more fully into the criteria and create a comprehensive list to support myself with during my next appointment
Hello,
Thank you for your response to me I have found it very helpful in how to approach this situation with my doctor. Whilst not a support worker my mother is planned to be attending my next appointment with me which will be helpful in terms of extra back up in helping me accurately discuss what I wish to!
repetitive behaviors for autism are categorised into two groups:
- movements such as hand-flapping, fidgeting with objects or body rocking, vocalizations such as grunting or repeating certain phrases. I hand flap, spin in circles, tap my fingers together and rock. Then I can have destructive stims such as head banging, forehead slapping and also banging my wrists together.
- autism traits such as routines and rituals, insistence on sameness (don’t like change) and intense interests. I have a lot of routine and order, I also walk the same way to go to certain places and if that route is blocked it causes me distress. I also wear similar coloured items of clothing. I have a couple of special interests too. Absolutely hate change!
food is more to do with sensory difficulties eg taste, so I really don’t like particular food textures or tastes and if someone tries to force me to have them it will cause me a lot of distress. Therefore I tend to eat a lot of the same things every time.
i hope if you get chance to read this it may help you understand fully what is meant by repetitive behaviours and as mentioned I would write down what you think your repetitive behaviours are and present them.
I feel your disappointment.
I would need to take someone with me to speak to a doctor.
Most of my life is repetitive behaviour, but none is dependent on the time.
Hi, Luke:
Thank you so much for the post and I’m sorry you experienced that situation with your doctor. I don’t know how you felt, but I would’ve felt not only misunderstood but also hurt and disrespected. I hope you’re doing alright.
I would definitely recommend bringing this up with your doctor when you have your next appointment. The caveat, however, is that no one likes to have the feeling of being criticized or their back up against the wall”, so if I was you I would be gentle and take a very soft approach as I brought it up with him or her.
Specifically, I would say something to the effect of, “Perhaps I hadn’t communicated it clearly, and I just wanted to clarify that I definitely have repetitive behaviors. I engage in them throughout the day and I’ve brought with me a list of all of them to give to you. I would really appreciate it if you would please record these behaviours as a part of my assessment and place this document into my file.”
Then, I would make sure that you had kept a copy of that list for your own records, to have on hand. In the event that for some reason you are not diagnosed with ASD, and your “lack of repetitive behaviors” appears to have played a role in the lack of diagnosis, I anticipate you could formally apply to NHS for a reevaluation/second opinion. As a part of that you could provide the second doctor with a copy of your written list, as well as your oral account of what you said to the first doctor about the issue.
I would also recommend that if at any point you feel that your current doctor is not listening to you or engaging in the assessment process in a thorough or respectful way, you consider contacting advocacy groups such as the one that hosts this website, to request that a support worker if possible attend your assessment appointments with you. You could specifically say you would like to ensure that you are communicating clearly and that the doctor is hearing you and giving you the benefit of the doubt.
I’m wishing you all the best in your assessment process, Luke. Again, thanks for the post,
Elizabeth
yes u need to ask your doctor about this ---- just say it straight out that you believe you have repetitive behaviours and then hand him/her a written list of your repetitive behaviours.