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Misconceptions about Female Autism: My experiences and viewpoints of autism as a 55 ye...

Misconceptions about Female Autism: My experiences and viewpoints of autism as a 56 ye... : The awareness of Sensory overload (meltdowns and...

Wednesday, 27 March 2019

My experiences and viewpoints of autism as a 56 year adult

The awareness of Sensory overload (meltdowns and shutdowns) in adults has been overlooked as the NAS 'too much information campaign at a shopping centre' only covers children and not adults.  Adult autism sensory overload does not get the same recognition even if they have the similar problems.  It is referred to as anxiety in adults as there is a held opinion that meltdowns never occur in adults as they can cope better but forget adults who never got diagnosed as children will have never had the support to help them cope with meltdowns and shutdowns and so their problems were ignored and say that it is due to either mental health problems or another disability/health problem.  More awareness and recognition of meltdowns and shutdowns in adults is very much needed to highlight the issues of sensory over load which is caused by sensory processing disorder.  When adults tell ‘experts’ that they have meltdowns and shutdowns they are told that they are only experiencing anxiety and downplay the effect of their sensory overload problems and tell that it is just normal anxiety.  It is not recognised because it is still thought that meltdowns only affect children as ‘experts’ have very little knowledge of how autism affects adults.
The adult autism myths need to be addressed as well as the lack of understanding about adult awareness, as autism professionals presume autistic people reach adulthood their autism sensory sensitivities disappear.  There is a belief that ASC adults will be completely free of meltdowns and shutdowns as they get older and they give the impression that they can cope better in life, but this is not true.
What happens is that they may develop coping strategies and methods to cope but this does not always help to all autistic adults especially when they are in places and situations that cause them a great deal of stress or when they are ill or their physical and mental health is run-down, they will either have meltdowns or shutdowns. Not all adults will have developed coping strategies and some will suffer in silence or be told that it is due to other reasons especially if they are autistic adults. Sensory issues do not go away; they will either stay the same or get worse. Girls and women with ASC are thought to have the same interests as their neurotypical peers but this not always the case and everyone is different.  When I was a child, I was poor at imaginary play, did not play much with my dolls.  I even had a teddy bear but did not know what to do with it.  I was an avid van of Doctor Who and Star Trek (the original series) and I am still an avid fan.  I was more interested in board games and reading factual books and going on nature walks with my sisters and cousins, but according to experts that this can’t be true.  I did not imitate my friends as I stood out from them and was years behind them in my social development and was very much behind them in my school work as I was told by teachers that I had poor comprehension skills, erratic spelling poor handwriting and grammar.  I was left out of team events as I was the last one to be picked and when books were given out by one of the pupils I was purposely missed, and I would have to tell the teacher that I had not been given a book.  I experienced a lot of bullying when I was at school and college.  The bullying I got from college was from one maths teacher who I asked a question told me to look for the answer in the book (but with my undiagnosed dyslexia and dyscalculia could not do) and another time I was on a employment computer/work experience and training programme and was told I was not trying enough to look for work and even if I told him my difficulties and circumstances due to living in a remote village in Barrhill in SE Ayrshire in Scotland, the tutor/support staff did not listen and in both circumstances I ended in getting so upset, I cried.  In those days in the 80’s and the 90’s teachers could be as rude as they like and if you were unemployed you were thought as lazy, which is still the same attitude towards the unemployed.  I had a nervous/mental breakdown due to the pressure from the post Work Programme so-called support but it was really a way to bully and threaten the unemployed to apply for jobs no matter where they are and if they were suitable jobs even if they did not meet the criteria (no formal qualifications, very little work experience and other barriers were not taken into account), you did not just have to look for work but apply for jobs, seven days a week, even on Christmas day.  I ended up applying for at least 60 jobs a week most were in London and most where for jobs that would involve 4 hours or more travelling a day.  This was before the congestion charge and it was taken for granted everyone could drive or have access to a vehicle.  Disability and health problems were not taken into consideration.  I ended up on Level 2 computer course which I could not cope with as I still had to apply for jobs on the days that I went training and on other days.  After the first I became so stressed out, I ended up having a nervous/mental breakdown and with the help of MIND who recognised I got off the course and off the post Work Programme monitoring programme.  They helped me get sick notes from my doctor and then apply for Employment Support Allowance which I got through MIND support along with help to get my autism diagnosis.  I also got help and support in getting PIP but was rejected and was given support from Thurrock Centre for Independent living in my PIP application and appeal.  I was supported by my PA from Thurrock Lifestyle Solutions on my appeal.  I feel that the stress on being on the Work Programme and post Work Programme affected my mental and physical health as I internalise my feelings and have great difficulties in expressing myself then.  I feel l have been helped a lot by BATIAS who helped me in getting me support from Social Services and contacting Basildon hospital to get my short autism assessment report as well as tell my older sister Margaret that I have been diagnosed with autism.  When BATIAS tried to contact BASILDON hospital they were told they did not have an Asperger’s Service, but they did, and it was part of the mental health unit run by SEPT.  There was no clear way of accessing the SEPT Asperger’s Service and with the help of Thurrock Centre for Independent Living and after many telephone calls and emails and threats that if they did not respond to my request that we would make a formal complaint that I got my formal report but I had errors in it regarding my employment saying that I worked with late Dad at the salmon packing firm, which was not true as he only took me to work but I did work for him at his draughtsman office where he drew plans to refurbish pubs and restaurants. It should that the autism was not taking notes and was not listening to what I said but they gave different meaning to everything I told them.  I took me over 6 months to get my short assessment report (I was told it would be sent shortly which I thought that meant days not months) and another year for the full report.  If I did not have the support of Thurrock Centre for Independent Living, I would be still waiting for my report.  After I was diagnosed with autism, I was told that because the service was too small, they only offered a limited support service between the ages of 18-30, I was only given two website address on a piece of paper and nothing else.  They said I enough support but none of it was for autism.  I joined SAFE last year and when I asked for social skills training, I was told it is too bigger subject, yet they have social skills training for children.
I then joined the National Autism Society Thurrock group last year and though it is a parent group they have given more support than SAFE.  I have only been to one SAFE event discussing PIP and the social care act which I did not understand as the information that was given out was very difficult to understand and I could not follow what the speaker was saying.  He could have been speaking in a foreign language.  The only event that really helped was meeting Alex Lowry who spoke at an event in South Ockendon.  The reason for the group it is that the only way you can get support for autism specific issues is to have a group for adults who have autism or have undiagnosed autism.  I do not want others to go through what I have gone through but help and reach out to undiagnosed adults and adults who have been diagnosed with ASC to get the support that they need through an activity orientated group.
I did not have friends who were older or younger than me as schools were different in the 60’s and 70’sthen than they are now. Friends chose me but I hung around them without really taking part.  The idea that girls and women have the same interests as their neurotypical peers depends on how you ask the questions as and only give an answer that they think the questioner wants to hear.  They may feel the pressure to fit in and hide their real interests or stop pursuing their interests in fear of alienating their neurotypical friends.  Autism difficulties do not go away and in some circumstances get worse.  Adult autism that is not supported with post diagnosis support leads to mental health issues and that sensory issues will get worse.  The older the adult is diagnosed and left to their own devices and not given the emotional support and intervention therapies and other autism specific support can lead not only deterioration in the mental health but in their physical health, i.e. fibromyalgia, rheumatism, psoriasis, skin disorders and IBS.
Support should be given to adults who have undiagnosed ASC.  This could be done through peer support and signposting to other support services.  This will include support to various types of advocacy depending on their needs.  They will be given help and information on what autism is and how to get a diagnosis and be supported through the whole process.  This will include post diagnosis support and it will not just have the very basic autism support but include all the help they would have got if they were diagnosed as young children.
Access to self help therapies would help autistic adults cope with their emotions, sensory overload, meltdowns and shutdowns and access to other intervention therapies. 
There should be access to Autism specific training and support: To help autistic adults understand and come to terms with their diagnosis,  and how will it affect them as well as how to disclose their autism diagnosis to siblings, spouses, parents, relatives and friends. Help should also be given in building up their communication passport and their autism hospital passport.  Information to local autism support services should be provided, if they are available.  There is no record of how many people have been diagnosed with autism as there are no concerted efforts to produce a autism population census.  This is partially due to apathy and lack of funding.

Travelling using public transport is an obstacle due to my many sensory and anxiety issues especially on buses with a combination of chronic pain and fatigue which worsens my sensory sensitivities. I find that having no idea what where I am going, or what will the place be like and having cope with the unknown and the unexpected very stressful and overwhelming.  

Filtering auditory information is impossible me, and it is a very painful and stressful experience. If I walk in a busy high street, I cannot hear the person who is talking to me as I am distracted by the background noise.  This can also happen when I am crossing a side road and not being able to hear vehicles coming due to the sound of the noise of passing vehicles coming from the main road along with other background noise. I have tripped over pavement stones and misjudged how far away a table is. I am bothered by clothes; certain materials, tags and dislike tight constricting clothing.  I am also very sensitive to humid weather and atmosphere.

I am distressed by others touching me. When I suffer from sensory overload I will have to fidget with things all the time; change in my pocket, my keys, a pen/pencil, paper clip, rubber bands, anything within reach. There have been times in the past where I have often touched and twisted my own hair. I have always been very sensitive to pain, especially as compared to others. I dislike the feeling of getting splashed. I have difficulty going to the beach; the sand blowing on your skin or getting on your body. I very great problems and difficulties coping with the heat and it is made worse when I am in crowded areas. I avoid touching anything "messy"; if I do, I must go wash my hands right away and/or only touch it with my fingertips.  I am also unable to walk anywhere there are puddles or where the ground is muddy as I do not like the feeling of the mud when I walk over it. I avoid fun fair/amusement park rides that spin or go upside down. I have difficulties eating food such as avocados because of their texture and taste as well as the colour because it reminds me of an old type of gel air freshener because inside it was a green gel which was very visible and was the same colour as avocados. I prefer to be in a darkened room and sleep with a very old pillow which I have been using for over 30 years as it is my favourite pillow.  I used to cover my head completely because of my sensitivity to noise and to hide any unwanted light. I have become nauseated by certain smells such as tobacco cigarette smoke, public toilets etc, the worst one is bleach which I will never use because of its strong smell. I become over stimulated when I am in crowded and noisy places.  Everything seems louder and my senses become more acute.  Smells become more pronounced especially when I am going past a perfume counter.  I also become overwhelmed, disorientated, not being able to focus or concentrate and I easily get lost.  I am unable to process what people are saying to me as my senses become overwhelmed and end up having a shutdown. I avoid crowds and plans errands at times when there will be fewer people but sometimes this is impossible if I am going out with a group of people on an outing. I notice and bothered by noises other people do not seem bothered by background noise and distractions. I am very sensitive to loud, sudden, sounds or commotion as well as being easily distracted by auditory or visual stimuli.
I cannot attend certain public events or places due to excessive noise.
I can't identify objects by feel if your eyes are closed. I have difficulty finding things in my shoulder bag or pocket without looking. I have difficulty going on elevators, escalators, or moving walkways. I have difficulty locating items in a cupboard, drawer, in your closet, or on a grocery shelf. I get disoriented and lost easily in stores, buildings, walking, etc. I am fearful of heights, crossing road bridges where there is traffic, walking anywhere there is traffic because I am sensitive to the vortex that traffic produced which makes me feel unbalanced and disorientates me. I have difficulty concentrating on or watching a film/TV show when there is background noise or distractions
I have difficulty concentrating and understanding what is said to me especially when I am experiencing sensory overload as I am trying to process the information and processing my response in showing that I am listening as well processing my reply. I have difficulty following directions if given two or three at one time. I cannot complete concentrated tasks if noises present. I am sensitive to sirens, dogs barking, vacuum cleaners, blenders, or other sudden/loud sounds. I talk too softly, and I am unable to speak any louder. I can get lethargic, hard to get going, appears "lazy" and unmotivated and other times I can be very focused and motivated and busy when I becomes engrossed in one single activity for a long time and seems to tune out the rest of my environment.  I used to spend hours at a time on fantasy or video games and activities on Facebook. Sometimes I have great difficulty settling body down for sleep or waking up in the morning. I have difficulty licking an ice cream cone neatly. I have difficulty speech and annunciating certain words and getting tongue tied when I am run down or stressed and anxious. I bump into things frequently; I live on my own, so no-one witnesses it.  As I am a quiet person, I bump into objects, but no-one notices it when I do. I used to push too hard on objects, accidentally breaking them but not any-more because I do not have much strength in my hands and arms.  I would accidently knock things over and break them. I have some difficulty telling the time on a 24 hour clock. I have difficulty organising and grouping things by categories, similarities, and/or differences. I cannot seem to find words in word search puzzles. I have never been able to learn how to ride a bike properly and only rode a very small chipper biker with trainer wheels and only rode them on the pavement; even then I fell off my bike
I can be clumsy, uncoordinated, and accident prone.  I have difficulty walking on uneven surfaces.  I have difficulty with fine motor tasks such as buttoning, zipping, tying, knitting, sewing, playing games with small parts, closing zips, and locks.  I sometimes confuse right and left sides especially when I am watching someone do something, i.e. a yoga/zumba instructor and try to listen to their instructions and copy them I am also unable to keep up with the rest of the class and is several steps behind everyone else. I have difficulty with handwriting; hard to read, takes a long time to write.  I have frequently bumped into people when I am in a crowd and objects. I am easily fatigued with physical tasks. I can be a messy eater, difficulty with eating utensils, spills and drops food at times
I knock drinks or other things over when reaching for them. I have significant difficulty learning to tie shoe laces.  I have difficulty with motor tasks requiring several steps. I have difficulty lining up numbers correctly for maths problems and writing out a cheque as I make several mistakes and have to rewrite a cheque several times before I get it right
I have difficulty learning new motor tasks such as a new dance, sport or exercise activity where I lose my balance. I have significant difficulty learning to type the "proper" way

We need autism professional to understand even though we are adults we still have sensory issues and need the same help as children do.  Just because we got diagnosed adults does not mean that we need less support . In some cases, there could be autistic adults struggling to live independently. Others will have no living parents or have siblings and cousins who can give them support. This is partially due that adults who have been diagnosed in their 40’s, 50’s and older even in their 70’s due to the very strict criteria and due to autism not known or understood well in the 1940’s to the mid 90’s and even later in some places in the UK.  The only people who would get diagnosed with autism would have classic autism and no other accompanying disabilities.