Tactile & Auditory defensiveness

With my new ADHD diagnosis and having my sensory profile done I’ve discovered some new things about myself and how I react to the world. My sensory profile was no great surprise, I already knew I had sensory processing disorder, but for some reason hearing I’m tactile defensive and auditory defensive was kinda hard.

There are 3 main types of sensory processing disorder – sensory modulation disorder, sensory based motor disorder and sensory discrimination disorder. My SPD fits under the sensory modulation disorder subtype where you can be over-responsive, under-responsive or craving. I’m over-responsive which means I’m more sensitive to sensory stimulation than other people, and I feel things too easily and too intensely.

The amygdala is the part of the brain that organises and directs messages from the sensory system. My understanding is that it decides what sensory input to pay attention to and where to send the signal. Certain things will need to trigger the automatic nervous system response – you wouldn’t want your brain to pause and think about what to do if something big was about to fall on you, you’d want your brain to react and move your body out of the way immediately. But less urgent stimuli should be organised and sent to the thinking part of the brain for it to decide what to do with the information from the senses.

I am over-responsive to sensory input and the messages my amygdala gets are garbled and inefficient. My brain can’t decide what to pay attention to and what is important, so it treats everything as a warning. Tactile defensiveness is where your brain pays too much attention to light touch and interprets this as a threat and activates your body’s automatic safety response – fight/flight/freeze. With auditory defensiveness the brain does not process sound adequately and it pays more attention to sound than it should. The brain is distracted by sound and always alert. The fight/flight/freeze mechanism is triggered constantly.

Sensory processing has a direct impact on mood and emotions due to the continuous exchange of information between the senses and the brain. My amygdala is processing much of the tactile and auditory information that it gets as a threat. This means my system is always alert and drives my anxiety level up. And because my amygdala is not filtering the important information from the less important (such as ignoring the touch of my collar on my skin) my brain is reacting to everything all the time, leading to frequent sensory overload.

I also process sound and touch with a much higher intensity which my amygdala interprets as pain. I have days where my skin hurts because it is overstimulated by the touch of clothing on my skin, my hair touching my ears and neck, shoes on my feet, pressure on my skin from my feet on the floor and so on.

It is incredibly hard to live in a world where your system is processing everyday things like wearing clothes as painful touch and your brain is so overwhelmed by every single sound that there is physical pain in your ears and you can’t hear the person next to you.

While I knew that I had sensory processing disorder and that I have always had problems with touch and auditory processing for some reason the words tactile defensive and auditory defensive triggered something for me. Somehow the word defensive (instead of ‘processing disorder’) made the effect on my mood and my upbringing and things that have happened in my past make sense. All the pieces that were floating around free form in my head started connecting.

I am starting to understand why I couldn’t ‘just’ eat the macaroni cheese my Mum made. I knew the texture made me gag but I had still internalised the message that I was a bad person for not just eating what was put in front of me. Snippets of past experiences keep popping up – ducking my head or pulling away from being kissed and hugged by parents and grandparents, crying about the seams on my socks, my terror of large crowds (including every school assembly in my whole school career), my hatred of wind/being damp/getting my feet wet, rage at all noises, my years of insomnia caused by the street light outside my window (the light and the noise of the electricity drove me nuts), sensory meltdowns where I just was completely overtaken my feelings of frustration and pain.

I have interpreted all this and many many more experiences as being ‘too’ everything – too much, too intense, too sensitive, too dramatic, too intolerant, too angry. These are all things I heard on repeat, because I struggled each and every day with what was happening to me. I couldn’t communicate it and I didn’t know why. My life was miserable at times. I was sad, I was overwhelmed and I was angry, and terribly, terribly anxious. I used to be awake for hours praying that my house didn’t burn down in the night, that there wouldn’t be a tsunami or an earthquake, that no one I loved would be in a car accident or get cancer or die in some other way. I was convinced that something awful was about to happen at each and every moment. And now I know that was at least in part because my whole nervous system literally was sending a constant bombardment of warning signals to me. I was anxious and on edge because my brain was telling me to be.There was a reason, and it wasn’t because I am a bad person.

But to know all this now is a double edged sword. Yes it makes sense of what I feel and how I react and what has happened to me in the past. Yes I can (and already do) use this knowledge to adapt my life to live with this condition. But I feel trapped in a body that won’t react like everyone else’s does. I feel sad that I spent so many years (close to 4 decades) blaming myself for being this way and also I can’t stop blaming myself for reacting the ways that I do. I always feel uncomfortable and frequently I’m overwhelmed and upset and frustrated, and that’s not just going to stop. There is damage from my past to live with and difficult sensations and situations to deal with every day. I simultaneously feel empathy for myself as a child and can hear that voice telling me to ‘buck up and stop being so silly’ and agree with that voice!

Today I’ve felt tired. The kind of tired where all I want to do is burst into tears because my life seems unfair. I hear myself say that I have tried so so hard and I still have all this to deal with and so what good does trying do? The diagnoses are stacking up and the picture is one I don’t like very much. I am very much wishing that I was someone else because who’d want to be me? I’m not going to recover from ADHD or ASD or SPD. I can manage these things but my ability to do that will fluctuate. I know other people are doing it tough, and everyone has their own challenges, but today is poor me day. I feel like I should get at least a little time to rage at the universe and ask what I did in a past life to deserve this before heading back in and trying again.

On that note, today I have had this song stuck in my head. I love it and I have listened to it on repeat for several hours today (and I mean that literally – it was the only song I listened to,and I just kept hitting repeat). It’s a song that was originally written for the movie Rock Star. In the movie the song plays right at the end and for me it’s about trying and failing and getting up to try again.

“I know I can be colorful, I know I can be gray. I know this loser’s living fortunate, and I know you will love me either way”.

‘Colorful’ – The Verve Pipe

Sound/auditory processing and ASD Part 3

This is a follow on from Parts 1 and 2, in which I mentioned a conversation Miss G and I had about auditory processing disorder and the different ways in which sound affects us.

Often these conversations arise at the end of the day when Miss G is in bed and I’m tucking her in for the night. Things that have come up for her during the day or week tend to come out, and with Miss G it’s a matter of teasing out the information on what has happened. She lacks theory of mind so often starts an explanation in the middle, or assumes I know things, or refers to things I have no idea about. This involves lots of me checking facts and interpretation and repeating them back to her (scaffolding her story).

Sometimes I say the wrong thing but I don’t know why. Or she tells me things and then I feel helpless because I went through the same thing and I still don’t know the right answer. Something I’ve started doing recently is asking if she wants me to help her with a solution or just listen to her. I seem to put my foot in it less if I ask this rather than assuming she wants my help.

When she does want my help I use my own experiences to try and help her think of solutions to her own auditory issues, and to understand what is an acceptable accommodation and what is not. Asking the teacher to repeat the instructions slowly directly to you is ok. Bugging your neighbour about what to do next because you didn’t hear the instructions is not. Sitting at the front of the class so you can give yourself the best chance to hear is great, sitting at the back because you can’t see the point in trying to hear anyway is not. Talking to the teacher at the end of each day when problems arise (as previously arranged) is an acceptable way of working through interpersonal problems with classmates. Sitting in the sensory room is a great way of calming down and re-framing things, staying there for an hour or more and not participating in classroom activities is a problem.

I must admit sometimes I do find this tiring. Often situations must be teased apart so I can understand what the issue is, then I need to check if she wants me to help her solve it or just listen. Then discuss ideas for solutions with her, and sometimes then follow up by going to the school and supporting her while she discusses with the teacher. I try and encourage her to discuss with the teacher as first port of call, as I want her to be able to advocate for herself, but sometimes this involves another decision as to whether that’s appropriate in that instance.

It can be very hard work, and it’s often constant as we can be discussing some new issue (or continuations of old issues) every night. I don’t know how other people parent, and I know that we are in a different situation to most as there is only one parent and one child, but this sometimes feels like a heavy weight for me. Sometimes I am bad tempered and have no patience and then I feel terrible. I want my child to come to me and discuss these things with me. And I know that we are certainly closer for it. I love Miss G with all my heart but sometimes I wish we had an easier time of it. I’m sure she wishes she had an easier parent sometimes!!

Ka Kite and Arohanui

Sound/auditory processing and ASD Part 2

My own auditory issues are more around not being able to tune out all the background sound and focus on what’s being said. So when we were having that conversation I needed to turn the radio off and look at her. I don’t do eye contact necessarily (it’s distracting) but in some situations I look at the person to help me focus. Our house does not have the radio going in the background unless I am listening to it (breakfast time usually), and we don’t have the TV on during the day. I can’t focus or function with too much noise.

In a noisy environment I may see people’s mouths moving but not hear anything they say, or catch words but not be able to interpret conversation, or not be able to respond because I can’t form thoughts in a coherent way. Sometimes this might look like selective mutism especially in meetings, restaurants or large groups of people but it’s just because I can’t process when there’s more than one conversation at a time and/or there is background noise. Particularly in restaurants and cafes where there is often music and a hum of conversation, plus cutlery/crockery rattling etc This means I may miss some or all of the conversation or I may hear and want to respond but not be able to focus on forming my thoughts and then speaking them.

Miss G knows that when she wants to talk to me that closer is better and there needs to be very little background noise if possible. This doesn’t mean she remembers very often until I remind her though!

The world is not set up for people like us, and even when others know you have labels they do not walk in your shoes so don’t always understand or anticipate the problems you face. You can’t yell “quiet” in a work environment because you have a piece of work you can’t concentrate on with too much noise. You can’t request people have morning tea or lunch in small groups so you can join in the conversation, or even hear it. You can’t tell people to stop opening and closing doors because the noise bothers you. You can’t tell the mowing contractor for the office that he should only work when you don’t have to be there because you can’t stand the sound of the weedeater and leaf blower as they cause you physical pain. But you can understand why you feel upset or angry when these things happen, and bring ear plugs or head phones, or go for a walk when the weedeater comes out.

Sound/auditory processing and ASD Part 1

Miss G (age 10) and I were having a conversation the other night. She was talking about how she has what she calls “short term memory loss”. She likens herself to Dory (from Finding Nemo) who hears what people say but forgets it seconds later, and she tells people at school that to help them understand her. She was telling me her memory is terrible and she can’t follow instructions, and was giving me examples of this. Teachers and other kids at school are always mentioning that she is not listening and giving her a hard time when she has to repeatedly check instructions. I gently reminded her that she doesn’t have a memory loss problem, that she actually has auditory processing disorder. This is where the signals from her ears to her brain get scrambled and the message takes longer to get processed. She burst into tears.

She was crying because she had told people she has short term memory loss and she really doesn’t and she was worried because she “had lied to them”. We discussed this for a while. Sometimes telling people something that isn’t quite true but that is easier for them to understand is ok. While there’s nothing much wrong with her memory (her short term isn’t as good as her long term but there’s only a little lag) it’s easier for people to understand and relate to this than for her to try and explain auditory processing disorder to people. Explaining that there is nothing wrong with her hearing but the processing gets muddled to the other 10 and 11 year olds in her class could be tricky. I can imagine them interpreting it like she did – either she has a hearing problem (she doesn’t) or an understanding problem (she doesn’t).

My take on this is that it’s ok to say she’s like Dory – Dory is someone most of these kids will have seen in the movies and will have seen she’s still a character with a lot to give who just requires a bit of extra patience. Nemo helps Dory without treating her like she can’t do things and he sees the good in her. Maybe later on she can tell people what auditory processing disorder is, but for now if Dory is who she relates to then that’s ok.

So during our conversation we talked about my auditory difficulties (see Part 2) and hers. Different problems but same end result – we don’t hear what is being said to us. I am trying very much to use the labels we have to explain the issues we face without encouraging a ‘poor me’ attitude. And that’s a very fine line. Some days Miss G is very upset and feels misunderstood, particularly when things happen at school that she has inadvertently caused or contributed to. I remember what that was like at school and these are issues I still encounter now.

Trying to help her understand what is going on, not just with her auditory processing but also her autism and her muscular issues (hyperflexibility/low tone), can be really challenging. Almost every day seems to bring a new challenge, whether sensorially, socially or physically. And many of these challenges force me to examine who I am and how I interpret the world. Often I find myself realising that I haven’t dealt with issues in the most ideal way or gaining a new piece of understanding as to why something happened to me or someone else reacted in a certain way. I often don’t have the answers, I often put my foot in it, but I am trying. I have hope that will be enough as I have nothing else to give.

Ka Kite