So I have had a string of people telling me that I am an inspiration and to be honest I do not understand why.
For me, I am just living my life. I have learnt ways to cope. If I have a meltdown due to my autism I work from home till I have fully recovered. If I have problems with my back I work from home till I no longer need to. If I feel low I try and reach out to people for support.
The truth is that every day for me I do not know what I could be doing because of all of my disabilities. Apparently though because I want to work this makes me inspirational. Because I, with all my disabilities still go out of my way to support others, it makes my inspiration. I do not understand this. For me, I am just living my life knowing what I can and can not do and I make the most of a bad situation. I still try and do things that everyone else can do but I do it in a controlled manner. Because of this, I have to plan well in advance what I am going to do. It doesn’t make me inspirational. It just me living my life.
I don’t understand how me living my life makes me an inspiration? Can someone explain this to me?
Firstly this saying has just been explained to me. It means that there is something there that people are trying to avoid talking about. For my entire life, people would say this to me and I would say where is the elephant. I would even start looking for one. People thought I was being funny but I just didn’t understand what they were talking about. I honestly could not understand why the elephant would be in a flat in London.
So the elephant that I want to talk to you today about is the fact that we have a large number of women today who get either partial (like me) diagnosis of Autism or full diagnosis of autism in their adult life.
Those who are lucky enough to get the full diagnosis are better placed than people like me because you do not have to explain why you only have a partial diagnosis. Support can be easier to get and you do not have to jump through as many hoops as I do. I literally have to take my diagnosis report with me everywhere just to highlight the section on the report that says “In my clinical opinion Suze is highly likely to be on the spectrum but without the early year’s information we can not say for sure.” That sentence is the only reason I got any help because the person who did the testing also said she would benefit from the support afforded to someone with a full diagnosis.
But here is where we get to the elephant. The support for an adult with a full or partial diagnosis is limited. Even to the point that there are organizations who provide assistance dogs to autistic children but not adults. The support you get is limited depending on where you go in the country for adults and some even charge. This is great except for people like myself who is unable to afford it as I want to work. I am a disabled person WHO WANTS TO WORK and because of this, I am unable to get the support I need. I am even disbarred from some benefits because I want to work so can’t claim incapacity benefit or housing benefit.
Is it my fault I was born in a decade where it was considered that girls could not be autistic? No, it is not. Why have they not changed the process for diagnosis where they can say a partial diagnosis of autism? Women who get diagnosed as adults may find themselves being unable to provide the early year’s information. Again, why has it not been changed so that those of us who do have living relatives but can’t trust them to be honest for whatever reason be given the questions they need to find out and ask them themselves.
I have found out the following;
- I was 3-4 week premature
- No complications during my birth
- I was a very small baby
- I was unable to be breastfed
- I had issues learning my left from my right
- I had issues learning to tie my shoelaces.
- I learnt to walk faster than my siblings because I didn’t bum shuffle
- my reading was delayed growing up
When I asked if I could give this information to the psycologist I was accused of trying to manipulate the results.
More needs to be done to support those of us from the forgotten generation. We should stop letting ourselves be out of sight out of mind. It is unfair that we do not have the support and I mean proper support.
Just moving into my own place it took me 3 months to figure out what I needed to do in regards to setting up council tax because I was getting confused. I had no help. It got to the point that I had to call the council in tears. Tell them I was autistic and that I needed help to understand what I needed to do before anyone was able to help me.
Seriously this is the world we live in.
Dementia is a very hard thing to be living with. Both for the person who has it and those who care for them.
My dad has vascular dementia which made his personality do a complete 180. It is hard for me to watch at times because he says and does things that before he had dementia he would never do. My mum tried to get him to do his physio that he was given and she was told: “I think we should get a divorce”. Him not knowing or understanding that no solicitor would take him on with his advanced dementia.
We had a period of time when he was falling all of the time. One night we had to call an ambulance out because he could not get up and there he was lying on the floor with his pants around his ankles as well as his trousers. Not a man wants his daughter to see him like that. He can’t even remember how to get into a car.
My father slips away in front of my very eyes and I just wonder why God would create an illness like this. I don’t understand why this kind of suffering is allowed. I am a firm believer that Euthanasia should not be an option but honestly, this sometimes shakes my beliefs. I see a man who is proud and has done so much for his community church, a talented musician fade away and is slowly being stripped of his dignity by this illness and it makes me wish at times that this was an option. Is that bad of me?
I created a gofundme page so that I can start paying for support to help me with my independence. The only people who seem to be offering support for help with my needs are people who want me to commit money laundering. Seriously What the FUCK.
I need home care support to help me;
Buddying to help get me out and about;
All of this cost and I have no money because I choose not to be a disabled person who lives on benefits. I want to work. However, it seems that the only way I can get support for free I need to not be working 😦
I am not willing to commit a crime to get the money I need.
Life with a neurodiverse condition is hard enough however, life with two neurodiverse conditions which are polar opposites of each other is even harder.
At 16 I was diagnosed with dyslexia and slight dyspraxia. This amongst other things affects your ability to deal with sequencing.
At 31 I was diagnosed partially as suffering from Autism Spectrum Condition. This really makes me want to do things step by step and follow my routine.
Two neurodiverse conditions that are polar opposites of each other.
Normally the autistic side wins out with me and I am able to do things the way they are supposed to be done. However, 2 weeks ago I got over-enthusiastic and my ability to sequence what I am doing got me into trouble. Not only did it get me into trouble it left me feeling rather low. A few days later the autistic side of me took over and I realized where I had gone wrong but by that point, the damage had already been done.
I am feeling very shakey about this because I seem to of upset someone who I really admire and I am learning more about emotions so I am now 60/40% sure that I have upset her all because my ability to sequence fell down and the emotive side of my head decided to make a power play.
I do not know what to do.
I lost the support I had from the NAS when I moved to Chatham and have been unable to get free support set up since. Now I do not know what I am doing and am worried that I have damaged the relationship I had with this person. 😦
Some times I do not know how I manage to get anything done in my life having two completely different conditions. 😦 It is like a constant war in my head over who has control and I am going to get it wrong from time to time. How do I rectify this?
When I was in London this week helping my mum with my dad and working I watched a show called Secert Teacher.
Steven Barlett went undercover in a school to give two young people an opportunity they never would have had. But I wonder, where is the help for those of us who came before.
I am older then he is by 7 years so when he was in reception I was already in year 7 & 8. I had dreams but growing up for me in the 90s was hard going. Girls could not be autistic and dyslexia was ignored by schools unless parents forced the issue. So I went through school being told I was lazy and not understanding why I was not like everyone else. I honestly didn’t even think I would get GCSEs and thought that my only aspiration in life would be a toilet cleaner if that. All but one school wrote me off.
Where was my millionaire to help me? No where in site.
I am like many people in my age group who got missed and ignored by the system due to lack of knowledge and pure ignorance. Maybe one day someone will reward me and help me get the things I need done done. But that is highly unlikely. I guess this generation gets all the break and my generation gets to stay invisible and our dreams ignored.
Now I keep my dreams to myself because I know, I have no way to achieve them and where people like Steven Bartlett can succeed people like me can’t.
I watched the movie Hobbs and Shaw today.
I have to say that it was not that bad. The thing that I found a little confusing is the amount of story lines in it. You had the two family stories as well as the main story. This I found to be very confusing. However, I understand why they did it as they would not be able to get the movie to two hours with the main story line.
Jason Statham and Dwayne Johnson do an amazing job in this movie and i loved the fact that there was an elament of comedy in it aswell.
All in all a very good movie, and a must see.