Posted in Emotions

To Diagnose or not to diagnose?

April is around the corner and with the obligatory showers also comes Autism Awareness month and I thought it was a good opportunity to discuss pros and cons of having our children ‘labelled’ with an ASD.

I had a conversation recently about someone who sees it as a burden and doesn’t want their child labelling as they feel it could reduce their child’s ability to get a job in the future and have a worthwhile career.

I did a little research on labelling children and there is a phenomenon called The Pygmalion Effect. Pygmalion was a cypriot sculptor who fell in love with a statue he carved. The movie My Fair Lady is loosely based upon the original story. The Pygmalion Effect states that high expectations lead to better performance and low expectations lead to worse, both effects leading to a self fulfilling prophecy. The kids of either of the expectations internalize their positive labels and succeed accordingly; a similar process works in the opposite direction in the case of low expectations. The idea behind the Pygmalion effect is that increasing the teachers/employers expectation of the child’s performance will result in better performance from said child.

I think my personal Pygmalion Effect synopsis is much more straightforward. Pygmalion fell in love with an idea. His idea of perfection in which he made himself but it as not real and longed for it to be real so much that he asked one of the gods to bring his statue to life as nothing could compare to his love for it. This resonates with us as a family and probably with any other parents who initially struggled to come to terms with the thoughts that their child wasn’t as they envisioned but that vision wasn’t real, it was a dream and even when Pygmalion carved his dream into a sculpture so he could see it, it still wasn’t real but nothing he had could compare to this idea of perfection. We all want the best for our children and want them to have every opportunity to reach their own potential. We might worry that a diagnosis runs the risk of exclusion, bullying or even well-intentioned fuss being shown towards them. Bullying and exclusion however are problems for anyone with or without a diagnosis however with more openness and education both formal in school settings and informal like our blog and the many others out there about Autism people will begin to understand and help people see the child and not the label. I’m not saying that it’s not a difficult battle but I want to be on the right side of it. The side saying ‘Its ok to be Autistic’, ‘Its ok to different’ because looking at the people around you are we all really the same on a neurological level? No.

Will Autism prevent my child finding a job or more importantly a career? Maybe. But the more understand there is on this subject the better th chances will be.
As of 2016 just 16% of Autistic adults were in full time employment and an additional 16% in some form of paid work, at this point the National Autism Society were reaching out to companies to become Autism Friendly Employers. David Cameron (The pig guy🐖 incase you can’t remember. Who could forget?) said by 2020 they aimed to increase this, doubling it to 64% of Autistic adults in paid employment and narrow the gap but the government have yet to publish any findings, in fact I have struggled to find any statistics since the initial report in 2016 by NAS.
In 2019 Minister of State for disabled people; Justin Tomlinson said they are now going to ‘look at’ measuring the statistics of the employment gap… If they have not yet started monitoring the statistic how did they expect in to improve 3 years after Cameron’s promise? We are now in 2020 and have no idea if things have improved or if any of the schemes regarding getting Autistic people into work have been working!

There was due to be an Autism at work summit in London on 4th June this year but due to the current situation it has been postponed… God Damn you COVID-19 😷
I’m really hoping it gets rescheduled as I would love to hear about initiatives to help people with Autism in their future and it would be something I would love to get involved in and hopefully bring to my own workplace.

I am very pro diagnosis. It is so difficult to get children with a diagnosis the correct support and almost impossible for those without it.
How can any parent purposely stop their child getting the support they need at such a vulnerable age to protect something they may not need protecting?
We all know William has a developmental delay that may or may not be related to his autism; so lets ‘ignore’ that just for this hypothetical scenario… So William is starting mainstream primary school because without the right steps in place he doesn’t have a cat in hells chance at a special school place or the special provisions available in some mainstream schools. He can’t focus in class as they aren’t teaching him in an appropriate way to he needs so he isn’t performing in class and is labelled as a “naughty” child because he is lashing out in frustration and has hit someone and bitten the teacher when they tried to show him how to hold his pen. Other children don’t want to play with him as he wont play the traditional way and won’t have the immediate guidance he needs. He is sad as he is frustrated and segregated from his class. He goes to high school but because he wasn’t supported enough to be able to focus on sitting exams he is automatically placed in the lowest settings but he still struggles to perform. He won’t wear his school uniform because its itchy or the buttons are in the wrong places or simply because he doesn’t like the colour. They send him home to change but he wont. He is excluded because he keeps going to school in the wrong uniform or when in the right uniform removes items of clothing in public because he doesn’t understand it’s not appropriate. The school doesn’t want him to sit his GCSE’s as there is no way he will get any grades and he will bring down the schools averages but he also doesn’t want to sit them; he doesn’t want to be the big musty smelling hall in silence for all that time when he hasn’t learnt what in front of him in the last 5 years. He’s just learnt that he is alone and no one really understands him.
He can’t go to college as he doesn’t have GCSEs and they won’t let him resit because hasn’t learnt the subjects. What chance of a career does he have now? but with a diagnosis there is a 16% chance but its a much bigger chance than without one?

Use this box below to let me know your opinion on diagnosis – its anonymous so don’t worry about being politically correct in order to explain your opinion as I will be doing a follow up to this post.

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Posted in Events & Holidays

Happy Birthday William! 🎈

How the hell are you three already? It feels like yesterday I held you in my arms for the first time (and then proceeded to throw up everywhere 🤮)
Three years down the line and we still sneak into your room to check you are breathing, although usually we can hear you snoring from the landing now😴
That’s 1095 days (1096 since this year was a leap year) of you. Every day filled with the joy we feel at being parents to such a loving little boy. Every one of those days teaches us something new about you and the world you creating for yourself.
You have made us become stronger parents and people than we ever thought we could be. We have learnt to fight for what is needed for you or even us as a family.

Its been a weird year. Its been a year of acceptance and education for us as parents; this time last year we were both in denial about Williams issues and we struggled to even speak to each other about it. Phrases like ‘He’s just lazy’, ‘He can hear you but he’s just ignorant’ or explaining away his missed milestones ‘Well he is very top heavy with his little bobble head’ (still true but not an excuse just a trait from the Hobman gene pool 🤣)
This time last year we were preparing for the 2 year check and the questionnaire had not yet arrived… but when it did we had a moment of clarity that all parents should have and agreed to be brutally honest about what he can and cant do. We filled it in with pencil and rubbed out so many times. We both took the time off work to make sure we could go together and keep each other honest. It was hard. Those of you that have reading this since we started it will have travelled with us on that journey and felt what we felt. Cried when we cried and gotten angry when we have.
We have had meetings about meetings, meetings about plans and a few meetings which actually resulted in action.

When we moved house in summer we decided to put Williams name down for the nursery that is attached to what we thought would be his school in the future… We are yet to receive a call to offer him a place in the nursery but I can categorically say we would turn it down. His current nursery have been amazing meeting his additional needs which is why we haven’t moved him and make the dreaded public transport trek back to our old stomping ground. They have been so supportive with us as parents and helped progress us through his journey more than we could have ever hoped. They source funding and provided one on one support with Val who is amazing with William and so knowledgeable about up to date processes for children with sensory issues, speech delays and more. They’ve arranged specialists to come in and assess William for any other issues he had been facing and kept us so up to date with his progress both developmentally and socially.
They arrange quarterly meetings to discuss next steps with us and all the professionals involved with William to ensure we are all signing from the same hymn sheet 🎶
If any one reading this wants any information on his nursery for their children please contact us via our ‘Lets Talk!’ page.

What a difference a few hours make… I often draft my posts and come back to them if I get too emotional or life gets in the way, I won’t take back anything nice I said about nursery as its all so true HOWEVER… today william came home with 2 bite marks. NOT 1 BUT 2 OF THEM! Apparently 2 separate instances today and there have been 2 others on different days! Thats 4 different bites over the last month. I understand that children with complex needs can lash out or simply not understand what they doing especially as William has bitten me on occasion however as William should have 1 on 1 support 100% of his time there you would imagine these could have been preventable or at least the second instance today! If it’s the same child (dont care which one) then safeguarding should be in place so that supervision is on hand at all times. If William has been bitten four times how many other children have been??? I have reached out to the manager to find out what is happening and what they are putting in place to prevent these incidents going forward so I will keep you updated on that.

We are in a little bit of an appointment limbo right now, for the first few months we had multiple appointments and now we only have one in the pipeline which is 2 months away. Don’t get me wrong it is an important one as its the PCP meeting (Parent Centred Planning meeting) to discuss his future education and where best would meet his needs. We will then put steps in place to obtain an EHCP (Education, Health and Care Plan) which will ensure he receives the support he needs when he transitions from nursery to primary school. I think we have both come to the conclusion that as things stand now that William will need to attend a specialised school who can cater to his specific needs however places in these kinds of schools are very limited as it is a massively underfunded sector. Money is often ploughed into hubs at mainstream schools which has provisions for children with additional needs however any child placed into one of these hubs is a child that thats needs to be in a specialised school and just watching the parents of children starting school this year talking about it on my support group was heart wrenching and filled me with a low burning anxiety that doesn’t seem to be going anywhere any time soon. We have received reports back from speech and language and IPass confirming verbatim what they had told us after their visits to nursery. They both contain what will happen next but no dates so we are just waiting for further info like with everything else. Just like waiting for his blood tests and genetics testing… just waiting for them to hit the mat in an afternoon 📫(our postman likes a lie in) It’s just the long wait now… sorry I mean the long wait just continues now. No confirmation as of yet that William has been accepted on to the ASD Panel list but again we are waiting for it.