Why I am so sick of the ‘truther’ community

I’ve always had alternative views. I don’t think we can be 100% sure of anything. This year has, for obvious reasons seen a rise in professional conspiracy theorists who think they are incredibly awake. They think the coronavirus doesn’t exist, that Bill Gates is a murdering psychopath and that Donald Trump is here to save mankind from human trafficking and is (was) about to arrest Madonna for unspeakable crimes against children. Far be it for me to say I know what goes on in the world but there does come a point where your mind is so open that your brain falls out.

Unfortunately, my partner has got caught up in this nonsense. To the extent that he cannot countenance my opinion that Trump needs to go because he’s an odious, bigoted narcissist. It actually has put a strain on our relationship. I spend my days looking after our 10 month old daughter whilst he flits in and out, talking to people (other people who are incredibly ‘awake’) on LinkedIn and largely ignoring us. It’s beginning to really get on my nerves. To put it plainly.

To the blinkered Q people, all I can say is the following.

  1. Trump is a vile man and he doesn’t care who knows it. He has set Americans against each other like no other president.
  2. If you don’t judge people by their words and actions, a dangerous premise materialises by which people can say and do nasty, horrible and even criminal things and be given a pass because ‘they’re the chosen one’. In case you didn’t already discern this, that’s a cult dear readers.🙄
  3. if it looks like a duck and quacks like a duck, it generally is a duck.
  4. STOP telling people that they are evil because they are worried about Covid 19 or because they wear masks. You don’t get to tell people what God thinks. Just stop.

What my partner doesn’t realise is that these narratives aren’t new. There was going to be an apocalypse in 2016, 2017, 2018 and 2019 as far as I know. Luckily, during those years he (and I!) were at work. He was not taking to clinically unwell people on LinkedIn. And I was not feeling angry about it.

This is not going to be a (too) long rant. I’ll just leave you with this thought. The fact that Trump lost the election removed a weight from my shoulders that I never knew was there. I’m pretty sure my intuition is more potent than complex numerology sequencing 🙄

Children grow up so quickly. Too quickly to waste your life engaging with people who abandon logic to the extreme.

Sometimes I look at other people’s lives and wonder why mine can’t be normal

I don’t usually spend my time feeling envious of NTs. But sometimes, I just want to be normal. I want to have a normal life with normal relationships. None of these things seem possible for me. I either end up with people who find me mysterious. It doesn’t work out. Or people who find me unsettling. It doesn’t work out. Moreover I feel like a car crash who can’t have a normal settled relationship like other people.

More recently I have discovered that I probably have ADHD like my second youngest daughter. This adds to everything else the realisation of why it’s almost impossible for me to be organised. My head can be a scrambled mess.

I’ve spent the last two years trying to have a relationship with a man who I actually love and want things to work with. It has been nothing short of heartbreaking trying to negotiate this task. He’s 11 years older than me but brings this up frequently. Our life goals are different, our outlooks are different. Hell, even our political standpoints are different. If one of his children was severely autistic, he told me. He would have had them adopted. I don’t actually believe this but it’s still not something I wanted to hear. He finds me unsettling because I just don’t seem strong or confident enough. I need to be looked after. I’m childlike. And I don’t laugh at the same things.

In the midst of all this, we had a baby. She’s a lovely little thing. I love her so much that it hurts my heart. As I do all my children. Obviously the situation is now more complicated than ever.

He says we won’t work out but he also cannot seem able to let me go. This has always been the case. It leaves me confused, feeling unworthy. And, in truth this situation is shredding my self esteem.

I end up wondering who I am or what I’m doing in this relationship. Waiting around to see if he becomes more consistent with me. He never does, he just tells me how even though he loves me I don’t make him happy enough. Then later apologises. Rinse and repeat…

I have lost myself in the process of this whole thing. And I can’t help thinking that if I wasn’t autistic, I never would have. I would have found the right person in the beginning. Life would have made more sense. I would have a secure home life. Or maybe not….



Tips on how to make a successful application for Disability Living Allowance for children (with general advice about the language used)

Your child is entitled to DLA if they need more help, support and care than NT children their age or children without a disability. They don’t have to have a diagnosis, though of course, submitting diagnosis reports can help.

One problem that people run into with DLA applications is that the assessor who looks at the form will be looking for particular words and phrases to be used. This fact is not advertised and so claimants don’t know what the assessors are looking for. It can be confusing to be turned down when your child is obviously in need of much more care than most children their age.

Here are a list of words and phrases that you should try to use when describing your child’s difficulties and care requirements. I myself have successfully used these words and phrases in my daughter’s DLA applications and also my father’s attendance allowance application. It is not a case of not telling the truth, but a case of describing the difficulties in a certain way.



Substantial danger

(In relation to) bodily functions

Throughout the day/ night





These are not exhaustive but they are the words that I have successfully used and are, I believe words and phrases that have been agreed upon in tribunals in the past.

I will give an example of two ways of describing a child’s needs and the second example is the correct way to describe needs.

1. Lucy is always trying to put her fingers in the plug sockets around the house which is really stressful and worrying for me as a parent because I worry that she will injure herself. She doesn’t understand that this is dangerous.

2. Lucy requires my continual supervision and attention throughout the day because she tries to put her fingers into plug sockets which puts her and others in substantial danger.

Both paragraphs say the same thing but the second paragraph explains it in a way that will help to get the award.

When it comes to mobility, if, like my daughter your child can physically walk but can’t safely make a journey anywhere or requires ‘restraint’ then you can argue that they meet the criteria for higher rate mobility based upon the fact that they have severe mental impairment. Note that ‘restraint’ can simply mean a hand on their shoulder so that they don’t run away when out. My daughter can run like the wind but she has no notion of any danger. She therefore gets higher rate mobility.

Here are some other tips;

– where the form asks you ‘how long’ or ‘how many times a day’, write ‘throughout’. The questions are designed to encourage you to make it looks as if your child’s needs are not as severe as they are. If your child’s ability to do something or their need for your help to do it at any time of the day does not change, you write ‘throughout’

– compare your child with NT children your child’s age. Eg, ‘Emily is unable to walk to the corner shop alone because she becomes distracted and places herself in substantial danger since she is unable to cross the road safely by herself and requires continual restraint to do this from myself at all times. This is in contrast to her NT cousin who is also 12 but is able to do these tasks alone, without her mother, safely.’

– Explain what you have to do for your child every day and explain what happens if you don’t do it.

– Don’t be afraid to repeat yourself again and again. You need to hammer these points home! You need to assume that the assessor knows nothing about your child’s care needs (because most likely, they won’t!)

– To get higher rate care your child needs night care for at least 20 minutes. This includes having to lie with them so that they fall asleep.

– There is no room for anything positive on these forms.

– Never say ‘sometimes’ as this will give the assessor a reason to ignore that point/issue.

– Write your own responses if you have more to say than you can fit into the form.

– if you get turned down, appeal, do not give up!

A note on PIP;

I have applied for PIP for my daughter. She was asked to go to a face to face assessment but her social worker wrote to the DWP saying that it was not in her best interests to be dragged to an unfamiliar place. So they awarded PIP based on available reports. She is in a residential school so there were many available staff to support this.

I am hearing that assessors tell blatant lies about what happened / what was said at face to face interviews. I have heard that you may inform the DWP that you wish to record the interview 10 days before. In doing this you may be able to deter them from lying because if you record their lies you have proof of misconduct.

Always take someone with you to the interview. If you go alone they will question why you could get there alone. And the interviews are often over an hour’s journey from home.

I am going to have more experience with PIP and will post updates on any useful information that I find out…..

Watch this space 👍

Tips on how to get educational provision for children with SEN

There are many people in this world who believe that when your child receives a diagnosis, they will suddenly become the beneficiary of all kinds of help and support. Sadly, this isn’t the case. So here are a few tips on how to negotiate the system we have to work with.

The first thing, the most important thing to remember is that as a parent, nobody knows your child better than you. And nobody knows what’s best for your child apart from you. And finally, you are the ONLY person who can advocate for your child without conflicts of interest muddying the waters. One of the advantages of being autistic myself in these scenarios is that I’m never swayed by the professionals because in my head, I know I’m right about everything(!) And my obsessive streak comes in handy too because I am like a dog with a bone and will never give up until my child has what she needs.

So, know what your child needs and do not be swayed from that thought.

You have to learn very quickly how the system works. There is a way to negotiate this system, which starts with realising that when accessing educational provision, local authority staff can become quite hostile the minute you suggest that your child needs costly support or anything they do not see as ‘standard’. I won’t go too much into my own struggles except to say that I’ve won two tribunals against our LA and they agreed to name the school I asked for the third time.  I was asking for an out of county provision.

Local Authority staff will tell lies that you just have to ignore. For example, we don’t provide X, your child is too young for an EHC plan, we don’t want to label a child, etc. LAs are required to view a child as an individual and they are not legally allowed to have blanket policies. And sometimes you need to remind them of this. In writing.

Many moons ago, when I was trying to get ABA into my now 16 year olds (then) statement, I talked to another family whose twins were both doing ABA. I remember clearly their words to me

’The LA should be regarded as a cross between Satan and Hitler. Have as little to do with them as possible, except to get your child’s legally binding Statement into place’. *a statement was the old name for an EHC plan.

Certainly, this is a cynical approach. But did it help me? Absolutely, it did. I became uninterested in what the LA were up to because it was clear they would do anything to avoid helping my daughter in order to save money. In the run up to our first tribunal, the one to get ABA, I used the data protection act to get the LA to cough up my daughter’s file to see how they had made decisions about the non existent provision they had (not) put into her statement. I discovered a hand written note from the LA’s own Educational Psychologist which said that ABA was ‘too expensive’, that it would ‘set a precedent’ together with personal comments she felt fit to write about me(!) I may be quirky but this was supposed to be about my daughter!!

The fighting never ends but I would like to offer the following tips when trying to access provision your child needs. This is specifically regarding education. I will do advice on Disability Living Allowance at another time.

– Find out who your child’s case worker is and keep your correspondence with them via email

– keep correspondence to email only. If something was said over the phone or in person it did not happen. Or at least, you cannot prove it was said.

– keep your contact with them to a minimum. They will drain you and you need your energy for the fight to get what you are rightly asking for

– do not be swayed by emotional blackmail shit like ‘oh, by taking the council to tribunal you are depriving other kids of what they need’ often said by people who work for the council.

– In the run up to an appeal / tribunal make sure not to give your case away. Don’t bother to attend meetings with the LA unless you have reason to believe that they intend to change their position. Which occasionally they do but often they don’t.

– use the DPA to dig up information that the LA would prefer to remain private.

– know the law!! Learn the law. This is your key to getting what your child requires. If the LA says or does something illegal then write to them telling them how they are wrong and cite the legal aspect. They rely on people not knowing this!

– If LA staff / representative says something that sounds shady/ incorrect/ bullshit then write them an email asking them to clarify or confirm if this is actually their position. Anything they say in writing, they cannot easily take back.

– When you write an email, copy in as many people as you can. The more people who are copied in, the harder it is for them to tell lies or say things that will make them look stupid, unprofessional or not transparent.

– remember that you are your child’s best and only advocate.

At a time when LAs are making cuts, the council will make it hard for you. But this is not your child’s problem! And your child is entitled to a level playing field.

I became very disliked by certain LA staff. One in particular would sit at Annual Review meetings and make repeated digs at me. I was seen as tricksy and awkward. Did I care? No. Do I see her now? No. Does she even remember my daughter now? I doubt it. She’s not the one who still lies awake at night worrying about her! There are times and places for popularity contests and this wasn’t one of them so don’t be intimidated.

‘Everybody hurts’

Even me. Especially me. But I don’t express it. I don’t tell people when they hurt me. I don’t tell anyone when I’m hurt. I am not sure if this has to do with my autism but I suspect it does. In my mind I’ve tried to work out why this is. I think that somewhere in my being I have an (irrational) belief that showing my feelings is undignified behaviour. So I simply squash it all down inside me. Until now, perhaps. I can accept that my brain is wired differently from other people. But I can also accept that change is possible if I have the self awareness to do something about it.

When someone hurts my feelings, if it’s a friend I tend to run away and just cut them off. I feel as though I can’t fix it. I don’t want to fix it – I just want to get away from those uncomfortable feelings of anger and upset, draw a line under it and go back to feeling calm again.

The one time in my life when my heart was really broken was when my youngest daughter’s father left me, left the UK and refused to speak to me about the fact I was pregnant with our daughter. To this day, he has never met her and has never even asked me about her. I was in so much pain. But I never told anyone about it. I tried to rationalise away my feelings to myself and everyone. I cried in locked rooms. It was probably the most awful time in my life. I couldn’t understand how he could just forget me and disappear without a backward glance. But I also felt that I was not allowed to tell him ‘Hey, you hurt me so much. You broke my heart’. This all became much clearer during my 2 years of psychotherapy. I faced up to the feelings, only because my therapist worked hard to get them out of me. It was all so raw that I had flashbacks and vivid dreams. It was an unsettling thing to experience. But I now feel better.

But this whole thing isn’t just about how I feel. Shouldn’t people be held accountable for their selfish, unkind, cruel and nasty behaviour? If I don’t tell people. If I don’t hold them accountable for hurting me, doesn’t that enable their sociopathic tendencies?

It’s a work in progress. But I believe that I can improve my default response of ‘I’m going to hide from that feeling. That didn’t happen and even if it did feeling upset is pointless.’ Because I matter. My feelings matter too. I’m not numb to the world because I’m autistic. But you may not notice my pain because I have difficulty responding in the appropriate way.