It is well known that autistic people struggle with communication and social interaction, it is one of the many traits of an Autism Spectrum Condition, but how the traits and difficulties affect an autistic person will be as individual and varied as they are. The amount of support they will need will also vary from […]Autism – Communication and Social Interaction — Me, my child, and the Autism Spectrum
How many labels have you been given throughout your life?
This was one of mine, I was forever hearing it from family, from school, from people that really didn’t know me at all. So much so I was lead to believe it was a bad thing, I started apologising for being too sensitive, and then I began to hide it. I believed it was a side of me that no-one wanted to see.
When I disclosed the sexual abuse I had been through, I didn’t cry, I didn’t know how. Because I showed no emotion, it was many months before the seriousness of it was realised and someone finally heard me.
People make so many assumptions, they label me to, but they don’t know me. They have no idea how difficult it is for me to talk surrounded by people, how groups of people trigger hypervigilance and anxiety. So I avoid It when possible. You see, its my brain and bodys way of protecting me, protecting me from being hurt again. I used to resent it and feel a failure because of it. But, I have learnt recently to appreciate it and thank it for keeping me as safe as it can. I thank the Trauma response.
I spent much of my teenage years, my 20’s and my 30’s living with PTSD, but it wasn’t until someone finally heard me and diagnosed me with it until the age of 40.
By then I was burnt out; my daughter turning the age I was when the abuse happened was a massive trigger, I was exhausted and I believed I was broken. I had always believed I was a broken human being, as I was very different to most of my peers, but now I was completely broken. I had to seek help, but obviously I didn’t know at that point what I was seeking help for as I had internalised everything. So I sought help for Social Anxiety.
It was that Therapist, who was obviously good at his job, he saw through it all, and he not only listened but he actually heard me. He diagnosed the PTSD, then a few weeks later came the bombshell, he thought I could be Autistic. I had hidden so much of myself growing up, to keep myself safe and because I felt so guilty for being highly sensitive, I didn’t really know who I was anymore. I was bits and pieces of the people around me, I had watched and I had observed others and used what I thought people wanted to see. I built my mask from other people.
When I reached 40 I was burnt out, like so many undiagnosed autistic women do, I could no longer mask, and the PTSD and Autistic traits became more apparent which lead to the diagnoses.
Trauma Therapy has taught me a lot.
I realise sensitive isn’t a bad thing to be, far from it. I used to think I was weak because of it, but It is one of my strengths I feel. I now know I have great strength, a strength that I never saw before, a strength that allowed me to survive.
Being sensitive, anxious and autistic, people don’t hear you, they don’t take you seriously. All they see is the trauma response and they can’t be bothered to look any further. I fight my daughters corner everyday, but people see the anxiety and automatically assume I have no idea what I am talking about. But, I know more than people realise, I know my child better than anyone. I know her struggles at school, because I have also lived them myself. People don’t hear me though, my child is also highly sensitive and needs support with school, I need someone to be our voice, to do the talking for us. They can’t ignore them, can they? They can’t ignore their emails surely?
My daughter is an observer, she will wait and watch, before feeling comfortable to join in. She doesn’t struggle as much with eye contact as I do. I don’t want her to feel she has to mask her way through life, I want he to be able to be herself. She is a wonderful human being.
Yes my child is sensitive, she cries when she comes across an animal that has died, she cries when the witch falls from the tower in the Disney film Tangled, she cries during pantomimes, I have to be so careful with what she sees and what she watches. She checks on our elderly neighbours, she loves with all her heart. Do I want that to change, no, but I need help to build her resilience and help to manage those big emotions. I am still learning how to manage my own.
There are worst things to be than too sensitive, Yes I feel things deeply, but being sensitive allows me to feel other peoples emotions like my own. It gives me empathy. I am not only sensitive when it comes to emotions, I am sensitive to noise, I am sensitive to smell and to touch. I am sensitive to bright light. There are only certain products I can use as I am sensitive to chemicals.
I used to feel I had to apologise and change who I was for other people, but I no longer feel the need to apologise for being sensitive. I know longer worry what people think like I used to.
Recently, I have done a lot of thinking about Autism and the different neurodivergent conditions; I guess that is normal after receiving a diagnosis. I have sort of come up with a theory, I have no idea if it has been touched on before as I have not researched it.
Back in the good old caveman days, when survival was uncertain, I believe we needed the different neurotypes to ensure the human race survived. Much like an Ant Colony, each Ant is born into a role, a role that seems to come naturally to them. You have the different types of worker ants or soldier ants, you have the male and female winged ants and a Queen, each one has I different job or role to play. The same can be said about Bees in a hive.
Who is to say that the same can not be said for humans, each neurotype has a job to do, for instance Neurotypicals being the social communicators that they are, ensured there were offspring to carry on the human race, perhaps the autistic thinking brain played the role of inventions and problem solving to ensure we could develop tools to survive, and so on. We are born naturally into our role for that neurotype, much like the ant worker that instinctively knows its role. Back then it wasn’t so much a disability and was a necessity.
The problems arose when the world became more neurotypical friendly and survival isn’t so much an issue these days, as we are top of the food chain. We don’t need our hyper senses to survive, which has made them become a problem and disabling, in todays social society. Our roles in survival have become redundant in society as it is now. We are more alone than in a colony and our roles have become disabled by a neurotypical world.
Anyway, perhaps I am over thinking and over analysing things, us autistic people are good at that.
You would think being able to sleep would be a good thing; there was a time I was envious of my partner, 3 minutes after getting into bed he was out for the count. Yet, for me sleep was difficult, I wasn’t able to just sleep, my brain didn’t know how to switch off. It took forever to get to sleep. Some days the tiredness was awful.
But, then It all changed I started to sleep more, but it didn’t seem to matter how much sleep I got, I was always exhausted. As soon as I sat down on the Sofa, I would fall into a deep sleep and it was difficult for my family to wake me up. The dreams I experienced where crazy. It turned out that I had an underactive thyroid, with medication it improved and my thyroid levels levelled out.
In February I caught covid, I didn’t have that bad a time with it, not compared to other people I knew. I had a few symptoms and a cough, but I have experienced worse colds than that. Since overcoming covid, the the exhaustion has gradually returned and is worse than before. I keep falling to sleep during the day, despite sleeping at night, but its not a restful sleep and I wake up just as exhausted as I was when I fell to sleep.
I hate feeling like this, my energy levels are zero, I am experiencing aches and weakness in my arms and legs, my legs go like jelly on the school run. After being late to school pick up last week because of it, I am spoke to the GP, and am now booked in for a blood test in 2 weeks time. He is wondering whether covid made my thyroid condition worse or knocked everything out of sync. Going to check vitamin levels and diabetes as well, just in case. If its not any of those things, then I have no idea what it is.
Although, I am having trauma counselling, went through the Autism Assessment, and have started another course, so perhaps that could be having an impact on energy levels too. But, im not sure, I am just fed up of feeling like this and falling to sleep as soon as I sit down or lie down.
I know exercise may help, but its a catch 22, I need the energy to be able to go for a walk I the first place.
This is the reason I have been so quiet on here, I haven’t been able to do to much reading and writing at present. Which is having an impact on my mood as writing is my way of processing and dealing with things. I apologise for being quiet, hopefully after the blood test I will have some answers and its something I can do something about. Even if its taking vitamin supplements or something. I am willing to do anything at this point as the pain and exhaustion is becoming to much to cope with.
I hope you are well, I will be back as soon as I am able.
Autism can be less noticeable in girls, more so with Aspergers Syndrome as there is no developmental delay, which means they often don’t receive a diagnosis until much later, and that’s if they recieve a diagnosis at all. When my child was 3.5 years old, I remember asking her Key Worker at nursery whether she […]The Autistic Early Years and beyond — Me, my child, and the Autism Spectrum
Well, its official, I am autistic.
Specifically Asperger’s, the assessment screening I had still uses Asperger’s as a diagnosis. It has taken me 24hrs to get my head around the report, and to work out what I am feeling, I think I have experienced a whole host of different emotions, but the main one is relief.
I spent most of my life believing I was broken or failing as a human being, why did I struggle so much when others could cope, a diagnosis of autism means I am not broken, I just have a different neurology. I finally feel heard and validated. in fact its a strange sort of feeling.
The last appointment was really interesting, we talked through the report, and she explained how some autistic people are predisposed to anxiety and depression, due to rigid thinking and ruminating about things and social interactions. The constant analysing can be exhausting and going over negative experiences many many times, can lead to low mood and being self-critical. I learnt quite a lot during this last appointment, and I am grateful to the psychologist for explaining things so well and allowing me greater understanding.
Now that I have a official diagnosis, I no longer have doubts or feeling like an imposter, I am autistic and have it written down in black and white. Apparently I will receive a full report and shortened version, the short version I can use for sharing with services and employers, should I need too.
I have been quite open with my diagnosis, I want to show my daughter that it is okay to be different, it isn’t a bad thing. Its like an iPhone and android phone, they may run differently and do different things, but they are both good at what they do and both as valid. If I were to hide my diagnosis from the people around us, what would that tell my daughter, she needs to be shown that autism isn’t something to be ashamed off and that you don’t need to hide that part of yourself away. Who you tell is a choice, but its okay to be yourself and ask for adjustments if you need them.
Autism has been a greatly misunderstood condition, there was a time when it was considered that only males could be autistic, and females were missed. Although, having said that, a huge amount of males were also missed as they went unnoticed. Things are changing with the help of the media and the celebrities who are sharing there journeys and their recent diagnosis, I misunderstood what autism was, as a male relative was diagnosed as a child, and I was nothing like him. I made a judgement. It was only when it was suggested I was autistic that I really looked into it and realised it was a lot more complex than I had realised.
Its time for me to be less self-critical and learn what autism means for me, its time to really listen to my needs and learn who I am. I have spent years hiding who I am, not allowing myself to be visible to others, because I felt not good enough and to prevent being hurt. Maybe now, that will change, but I know it will take work and a new found acceptance of myself.
I apologise for being quiet on here in recent weeks, It has been a crazy few weeks.
My mum had her part of my autism assessment, it was done over the phone. I can’t go in to much depth about it as I was not present at the time; my mum has a really good memory and was able to answer a lot of the questions about my childhood.
It was interesting to listen to aspects of my childhood, at the time, to hear about the differences between me and my siblings and to hear about my mums pregnancy and my birth. My dad never made it to my birth, let’s just say it didn’t go to plan.
I had a thing for books even as a child, I loved reading and learning, so much so my grandparents would give me a readers digest book every birthday and Christmas. There were wildlife ones, one on rivers and lakes, one on woodlands and forests and so on. I loved those books and still have them now. I believe that I was an early reader, not as early as my child though, and English was my favourite lesson. Maths was a difficulty of mine, numbers still make me panic now, I mean I get to the answer eventually, but I panic first whenever I have to do any sums or come face to face with numbers.
The book thing has a life of its own, I have purchased so many recently, mainly on mental health, psychology, child development, autism, coaching, CBT, counselling and so on. The trouble is I hate parting with them afterwards and really need to get a proper book shelf unit rather than shelves attached to the wall as I am running out of room.
There were questions about friendships when I was I child, I never really had a group of friends growing up, I had individual friends, although they had a group of friends themselves. Friendships were hard as a child, I could never keep track of who had fallen out with who, how they could go from the best of friends one minute and worst enemies the next. Things are pretty much the same now to be honest, I still have individual friends, friends who are not friends with each other. I have also had friendships that have broken down over the years, I don’t always understand why, but sometimes it is through misunderstandings. There are certainly people that don’t get me and I don’t get them, I guess that is where the neurological differences come in. The way I see things are different to the way they are seeing things.
My mum helped at the playschool I attended when I was little, so I didn’t have the issue of separation until I started school. But, I was ok going into school at primary, it wasn’t until secondary school that I struggled going in and took a lot of time off and missed lessons due to hiding out in the library or medical room.
It was interesting hearing about the parts of my childhood that I couldn’t remember, like I said, my mum has an exceptional memory. I have quite a good memory in some areas, but anxiety has a huge impact on my memory, anxiety can stop you taking information in and storing it. There are days when I have no trouble recalling memories, but other times I have to work really hard to remember.
Personally, I believe that there are more neurodivergant people in my family than there have been diagnosed. So growing up, things that are considered as traits were normal within my family. It was when it came to friends and school when my differences and feeling like an alien came in to play. The awkwardness and social difficulties were and still are a daily occurrence.
I now have to patient and wait for the final appointment and the report, the waiting is the difficult part, as the need to know the outcome now is strong, and patient I am not.
I must remember not to book more than one appointment in one day, I had trauma counselling this morning and the 3rd assessment appointment this afternoon, and I can honestly say I am exhausted. My eyes are really heavy, but part of that is due to the very strong scent of a cleaning product which was used in the house today, its irritated my nose and caused a massive headache. My head feels like it is buzzing.
I am feeling seriously deflated today, a bit uncertain even, and a little scared.
Autism Assessment Appointment Three
Todays questions were about communication, social skills, friendships and relationships. I tried to answer the questions as best I could, but I was feeling a bit anxious after talking through difficult events in my life in trauma counselling this morning, my ability to process and explain things were slow. I kept getting stuck, the connection between my thoughts and speech was shall we sat sluggish and restricted.
I have had to think hard about my childhood a lot in recent weeks, analyse different parts of it and its been difficult.
I asked at the end of todays appointment if it was to early to ask what indicators were showing, but my case is complicated due to the trauma, and although I have a significant number of autistic traits, it will be difficult to say whether that is down to trauma or autism. So I may come away without a diagnosis, thats not to say that I’m not, its just it may be to complicated to diagnose due to other factors. Despite the family history and sensory sensitivities, it will still prove to difficult to diagnose.
The annoying thing is the therapist who referred me said that if I got through the initial assessment it was highly likely that I was Autistic. He seemed pretty certain, and in all honesty it explained a huge amount of my life and difficulties. Now I am feeling frustrated by it all, feel like I want to escape and walk away from it all.
The stupid thing is, its well known that autistic people are at higher risk of abuse and trauma, it can make them a target because of their difficulties with communication. Trauma shouldn’t stop them from having that diagnosis, should it. I feel like I don’t fit anywhere, a square peg in a bunch of round holes.
I have always found talking difficult, but whether that was down to autism or Sexual abuse and trauma is difficult to say. We’re my friendship difficulties down to autism or trust issues due to abuse. Difficulties in school, difficulties with holding down a job, sensory sensitivities, was it all just trauma related.
Every week on the school run, I stand there seeing the conversations between the teachers and other parents, between parents and parents, wishing I had their ability to chat freely. To be included with all the school stuff for my daughter, to fit in and be a part of something. I tried to access help to be able to talk to school and explain things. It didn’t happen, its never going to happen.
Maybe I am a weird person and not autistic after all, maybe I am a broken weird person instead. My life had finally started to make sense, I had answers, now once more I am left hanging in limbo.
Perhaps I just don’t belong in this world.
I was placed on an 18 month waiting list for an Autism Assessment, but i was given a date for my first appointment a couple of weeks ago, which only made it 16 months. I was 40 at the time, im now 41.
It seemed such a long time to wait at the start, but then life happened and I got distracted, and before I knew it the time was almost up. All of a sudden I felt unprepared, despite the fact that I had written and rewritten lots of notes to refer too, but so far I haven’t even glanced at them.
I was so nervous about the first appointment, I didn’t know what to expect, so I was unable to prepare myself for it. For the two weeks between being given the appointment date and the appointment coming around, I was highly anxious and worried. But, you know what, these things rarely turn out as badly as you expect them too. You would think that I would know this, well I do know this, but it never stops the worrying and anxiety before an event. My mind creates a million different scenarios of what may happen and what could go wrong. I have a strong need to know what the outcome of appointments and events will be, but I have know way of knowing for this, I just have to have patience and have trust in the process.
I am trying not to have any expectations, just to go with the flow and hopefully end up with the answers I need. An explanation for the difficulties I experience and for the struggles with mental health.
Autism Assessment Appointment One
The appointment was via video call and was not as bad as I was expecting; although I remained nervous throughout the 1.5hr appointment, the clinical psychologist was friendly and explained everything in detail so I could understand the process, so it helped to reduce some of the anxiety I had.
To begin with she carried out a risk assessment by asking certain questions, and talking about both mental and physical health. Then we moved on to other things, I can’t remember the order of them now, but it covered areas like my family tree, sensory sensitivities, likes and dislikes, school and childhood. We also covered the therapies I have had – 5 rounds of CBT.
When I am anxious I struggle to remember everything, which I hate and it causes me to worry. I normally ask for an email, like meeting minutes, after important phone calls or appointments, so I don’t forget important information. But, I wasn’t sure if I could in this case, I am sure at the end it will all be written up in the report.
To begin with I was able to answer questions quite easily, but the more tired I became the more difficult it became to string an answer together, I am not sure if she noticed or not. I had already had trauma counselling in the morning, and the day before I had a dentist appointment, so towards the end of the assessment I become really tired.
I am the type of person that over-analyses and over-thinks everything; did I say the right thing? Did I sound stupid? Did I say to much or to little? Did I say the wrong thing?. Have I left anything out? As soon as the appointment was over it started.
At the end of the appointment we set a date for next week for the next part of the assessment. I spent some time afterwards photocopying my school reports from the last 3 years of school, as those are all I had, I posted them this morning in the hope they would get there before the next appointment. They should do.
Autism Assessment Appointment Two
My brain feels a bit frazzled after todays appointment, I can’t blame it all on the appointment though, I had trauma counselling this morning too. There was only 2.5 hrs between appointments, and although I fell to sleep for 20 minutes between appointments, I feel tired. Trauma counselling left me with a lot of realisations and gave me a lot to think about.
The assessment went well, although I felt a bit awkward and didn’t know how to answer some of the questions, or how to word the answers. It was mainly about routines and interests this session, I really had to think and recall memories from childhood. I was asked if when people make mistakes when saying a word or in what they are talking about, would I correct them and be annoyed by it. I remember doing this as a child, I would quite often correct my older sister and tell her when she was wrong, until one day her mother-in-law pointed out how rude and hurtful it was, and I tried not to do it to anyone again. But, being asked that made me think about how my daughter will correct me when I say the wrong word or pronounce it wrong, or when she thinks I am wrong about something. Oh my god, I now realise how annoying it is when you are corrected often, my sister (and others) were just to kind to tell me how frustrating it was.
A lot of things that I thought were down to anxiety or trauma can overlap with autism. What I mean is things I thought were down to Anxiety could actually be an Autism thing.
There were some questions that I understand, but I didn’t know how to explain my answer too, the thoughts didn’t transfer over into words. I think I was feeling tired at this point and I couldn’t think as quickly or process as quickly.
It was a shorter appointment this week, I think part of that was due to it not being worth starting the next area, social and communication, in the time left. So, another appointment was made for next week. After the next appointment she will make an appointment to talk to my mum, about my childhood and what the pregnancy was like.
I am now sat here feeling exhausted and can’t stop yawning, I normally try not to have more than one appointment a day, because I know how drained they leave me. Especially when I have to think a lot and use my brain. I am also otherthinking, thinking of things I should have said and didn’t, and things I did say and shouldn’t have.
One thing I realised today was that learning is a special interest of mine, I enjoy doing online courses about subjects I find interesting, such as mental health, caring for children, psychology etc. Another of my interests is photography, I love going out for walks with the camera, taking photos of the things I find. But, I don’t take one or two photos of it, I take loads at different angles and on different settings.
I don’t know if I will end up with a diagnosis or not, the trauma I experienced probably complicates things, I tried to work out what she was thinking but the truth is, I have no idea. The need to know the outcome is strong, but I will have to be patient and go through the whole process. I thought I knew what I wanted the outcome to be, but I am not sure I do anymore. I am hoping to get the answers to why I am the way I am, why I experience the difficulties I do, and why I have always felt that I was broken.
I thought I would write a blog post about the process I am going through, it helps me to process it better, not only that, but I had no idea what to expect and thought this may help someone else one day. I assume the process is the same for all adults, despite the differences in the presentation of Autism.
If I have any advice it would be to allow yourself plenty of time after the appointment to chill, because it can be exhausting. Also, try not to book other appointments for the same day.
to be continued……………….
I am and always have been a visual learner; for me to take things in and to remember them, I need to see it in front of me, either in writing, in pictures or on a poster.
Last night, after feeling rotten for 2 days, I realised I had forgotten to take one of my tablets for several days. I kept feeling dizzy, a bit spaced out, and I felt something I couldn’t quite put my finger on what it was. It felt like there were static shocks rushing through my body and head, which I guess are signs of withdrawal from suddenly not taking the tablets. I have started today adding it to my to do list, to ensure that I don’t forget it again, the reason I believe I forgot to take it was that my routine had changed for a week and life became exceptionally busy.
To Do Lists
I have started to write a To Do List, as a reminder of the activities I need to do during the day, if I don’t have it written down I am liable to not getting around to doing it.
I include Self-Care activities on my To Do list, without it I will be unlikely to include it as a daily activity, and then wonder why I am exhausted or burned out after a week without it. I have to include self-care to replenish energy and mood levels, I believe its called energy accounting.
It’s not that my memory is awful, I guess its more that I get distracted by daily life and get wrapped up in my anxiety and intrusive thoughts, that there is little room for anything else.
And let’s face it, writting lists is stereotypically an Autism thing, is it not. But then, I know many neurotypicals who write lists and have a dozen highlighters to make them visually appealing.
I have recently started to keep a journal again; In the past I start them and then life gets busy and I tend to stop writing. But, I realise it is something that I need to keep doing.
Journalling is a Self-Care activity for me, writing things down and being able to refer back too it when needed helps to reduce anxiety. Not only that, it helps greatly with my mental health, writing down anxious thoughts and getting them straight on paper rather than being in a muddle in my mind. Also, achievements are quickly dismissed and forgotten if I don’t write them down on paper.
My mind is a constant cycle of analysing and over-thinking information, conversations, body language, anxious intrusive thoughts, and working out what to say. Keeping a journal and getting it out on paper helps to reduce the constant chatter of my mind.
Trauma Counselling and Note Taking
Even when it comes down to self awareness and learning about the impact trauma has physically, emotionally and mentally, and why my body reacts to certain things, I need to write a note or list and make it visually appealing otherwise I will forget about it until the next time I come across it. Especially when I’m stuck in high anxiety or burnout, I need to see it in front of me to remind me so that I am not to hard on myself. Old habits are so deeply engrained that they will take over, and are easy to return too. New habits and new learning takes time and practice, lots of practice, to make them automatic.
I am currently learning so much through Trauma Counselling, one thing that dawned on my recently when circling the PTSD/trauma symptoms I experience, is the fact there were so many of them and some I hadn’t even realised were down to trauma, I carry those symptoms around with me every single day and yet I still get up, carry on with my daily routine of being a mum, I am currently doing a course too. It takes a lot of strength and resilience to be able to carry on with daily routines despite feeling all those symptoms every single day. I used to think I was weak because of my struggles and experiences with mental health, but the truth is I am strong and resilient despite it.
Another thing I have learnt is the impact trauma has on the body, the reactions it causes to certain things are automatic, I have no control over it, so there is little point beating myself up over it.
I am the type of person who loves learning and there is this need to know how things work. I have a particular interest in psychology and self-awareness. I am slowly working out what works for me and what doesn’t, I have started to put posters i have created into an A4 folder, and I am filling it with information to keep referring back too.
Timetable or Schedule
I use the calendar on my phone, using different colours for different types of appointments or activities. Seeing what I am meant to be doing and where I am meant to be at a glance helps to reduce some of the worry or anxiety. I need to know what I am doing so that I can prepare myself for it, build myself up both mentally and physically. I also have to plan my time wisely, try not to have to many social events in one week, otherwise I will burnout or experience a social hangover. Neither is ideal.
I need to put these things in place to make life easier on myself, it helps me to manage my time effectively and reduces the risk of experiencing Depression or Burnout.