NO it’s NOT okay!!

It’s been a hard week, work has been busy and I’ve been commuting a lot this week so I’m exhausted!

Mimi has been withdrawn, moody and hot headed for a few weeks with a lot worrying her. I can completely understand why the puzzle piece is used to represent autism because it’s a bloody puzzling head spin!

A couple of things have really got to me this week and I need to vent more then anything!

First off, Mimi has had a visual stress test this week and it’s been concluded that she needs coloured overlays for reading – not a problem (£20 per flimsy overlay but ok!) when it comes to writing or being out and about and lights affecting her senses it has been suggested that she has a machine test to formally diagnose irlens syndrome OR dyslexia, again not a problem

But it is a problem….

Can I find ANYWHERE to do this test?? NO!

The nearest place is 60 miles away (an hour each way for Mimi in the car – NOT okay) it’s £175 for the assessment, NOT okay – that’s more then a weeks worth of shopping Money and with so many outgoings it means I’m going to have to save hard for it!

Then, once Mimi has had the assessment she may need tinted glasses, ok simple right….

NO, Mimi has very strong prescription glasses and every time she has a new prescription (every 6 months for the past 4 years) we are going to need to pay another £50+ to have them tinted and that’s even if we find somewhere to get them done!

How is it this is not covered on the NHS??

Next bug of the week..

Mimi has been unable to complete work at school this week and been given it to bring home

NOT OKAY!!! Home is a time for Mimi to rest between school and our time as a family and Mimi goes to school – she is not homeschooled for a reason! Mimi has seen this as punishment, she gets extra homework whilst her friends can have a fun weekend! Her weekly homework causes many issues on a daily basis as it is!

If Mimi can’t concentrate in class then they need to address this and find out why, what adjustments can they put in place to help her? OR maybe just take a moment to ask her if she is ok….

Mimi wasn’t okay, later she told me that a friend of hers (so called best friend) had hurt her and got angry with her for having ‘easy’ work to complete and not the hard work she had, this upset Mimi – she told me so

BUT in Mimi’s words ‘it’s ok because she is my friend’ NO NO NO NO NO IT IS NOT OKAY!!’

It is never okay to hurt your friends!

Over the past few months this said ‘friend’ has made Mimi feel worthless on many occasions with little digs, put downs and psychically hurting her and it is not okay! Ever!

When trying to explain to Mimi that it is not okay and this child clearly isn’t a true friend Mimi has got very upset and jumped to her friends defence. She doesn’t see it and that worries me more than I can explain

Mimi can not grow up thinking it is ok for people to hurt her just because they say they are friends, I’m scared what this can lead to when she is older, really scared!

Not only has all the above been a nightmare this week, we’ve had the usual meltdowns, worries and despair with Mimi about everything from a cut in her mouth to the tiny little blonde hairs on her legs (BTW it’s not okay to have hairs on your legs and it’s definitely not okay to shave them.,, how are we going to get around this huh? Mimi is only 8 and we shouldn’t have this yet 😩) This beautiful little kind hearted girl has the weight of the world on her shoulders and I don’t know how to take it away from her, I really wish I did! I would give my last breath for my children, both of them and it pains me everyday to see Mimi so distraught over the things most people see as trivial.

It’s not all bad though, we have each other and that means everything will BE OKAY

I have finally finished reading the last book in my pile and nearly ready to blog my reviews so keep an eye out…


“Typical” Autism in Girls & Boys and the differences

Disclaimer – This blog is based on my experience with Mimi’s Diagnosis and the assessments she went through. Not all Girls with Autism display the below traits and boys may show these traits too.

Autism is different in every child/adult and is not gender specific, the “typical” traits of autism tend to be more obvious in boys and more researched, its these typical traits that paediatricians look for when a child is being assessed and the ADOS questionnaire shows this. This leads to girls (and boys also) not being diagnosed quick enough and us parents feeling like we are going mad because there is clearly something going on but it can’t be autism because she is too sociable or because shes too verbal.

When Autism was first mentioned to me regarding Mimi, I laughed – don’t be ridiculous, she can’t be autistic because she speaks, she doesn’t rock and she talks to everyone and is very sociable and she doesn’t have a special “gift” with numbers or computers. How ignorant was I!?

I rattled this around in my head for a while and then spoke up to a friend who worked with adults who have autism and said I don’t think they are right, how can she be? Her response was “shes a girl!, girls go under the radar BECAUSE they mask it so well and are much more sociable then boys on the spectrum”

After the conversation, I done my usual. I googled! There is a few sites that explain how girls can present differently and from what I read it all clicked – they were right! My little girl was struggling so much more then I had ever thought and when I looked closely it was so obvious.

Mimi does speak – autism does not mean non-verbal and many girls with autism speak too much, normally about their interests and if your listening they will go on and on and on about them until the cows come home!

She does rock herself too, when you look closely you can see it. At the local playhouse I noticed her cover her ears when the loud music started, she sat on the floor and appeared to be rocking to the music but when I paid attention to her facial expression and the fact she had her hands to her ears it was clear, she was rocking because she couldn’t take the noise!

And she is sociable – but she has no boundaries and would literally go off with a stranger or invite workman up to her room!

She may not have a gift with numbers or computers but this kid could tell you the name of every pokemon, who they evolve into and what type of pokemon they are and where they typically live!

I threw myself into learning as much as possible. I answered every question on the ADOS questionnaire honestly and wrote a massive list of answers to go with the questionnaire – for example one of the questions was about her being sociable. I answered that she was meaning that she got a low score for this answer but I wrote on my backing sheet that she was way too sociable and explained about the strangers she had tried to walk off with (follow more like!) and how she would touch a strangers handbag in public if there was a shiny or fluffy keyring attached to it!

I was very lucky that our paediatrician read my notes and took the time to discuss them with me at length. He also has a lot of knowledge about how autism presents differently in girls and after just 2 assessments she was diagnosed. Mimi’s SENCO was one of the people who knew about autism in girls and she also knew that it was “normal” for Mimi not to show a lot of it at school but she took the time to get to know Mimi and like me, could see it.

This got me thinking though, if I hadn’t have been so proactive about learning about the differences and hadn’t of attached my backing notes with her questionnaire and made a point of discussing this with the paed then she may never have been diagnosed!

So for all those parents of girls (and boys) who are quirky or have unexplained meltdowns that want to know if their child could be autistic despite not showing the “normal” signs then here is a list of some of the differences:

• Schools tend to see the same meltdowns and difficulties that the parents see – with girls they tend to sit quietly at school and bottle it all up until they get home. This leads to the parent feeling like the child is only doing it for them and it must be their parenting that is the problem

• Boys have difficulty with peers and tend to play by themselves and avoid playing with other children, their interests are normally frowned upon by kids the same age – girls observe their peers and learn to mimic them in play situations, their interests are normally the same although more intense. Girls tend to be the ringleaders, need to be in charge and set rules, providing their friends go along with them there isn’t much friction (playing with younger children they can boss about is more likely)

• Boys can be more disruptive and aggressive when they are in mid meltdown whereas girls are more likely to withdraw and shut down leading to anxieties, depression and self-harm

• A mother is naturally more likely to have face to face discussions and play with their daughters then with their sons – this is subconscious and we are not doing it on purpose but it means girls learn more facial cues and expressions from an earlier age then boys and learn to mimic these.

• Lacking eye contact is seen more in boys, girls can often give too much eye contact and stare rather than avoid

• Boys are more likely to have language delays whereas girls are likely to have been advanced in their language and speech

• Repetitive behaviours are more common in boys than girls

• Boys tend to lack in imaginative play whereas girls will live in fantasy land with fairies, mermaids and unicorns

• It is more common for boys to line toys up, girls will organise and sort toys into categories

• The tone of a boys voice can be very flat, girls tend to be more high-pitched and babyish

• Empathy and emotion can be lacking in boys, with girls the slightest problem with another person can feel like the end of the world! Girls can show way too much empathy to the point of depression for another person

• Girls need to feel like someone “gets” them, when they are comfortable with that person they will discuss their anxieties and worries. If they don’t feel like anyone will understand then they will keep it all inside. This can become very tiring and lead to emotional outbursts when they are next with the person who gets them.

• The masking, mimicking and social pressures that girls often do/feel can be very overwhelming, they tend to spend their time directly after school on their own in their room in the dark or under blankets.

As I said at the start of the blog, the above can be the case for boys with Autism and not just girls. The point is the diagnosis assessments need revising! Our children need to be assessed on an individual case and the assessments should be more than a score on a questionnaire.