How to raise a happy autistic child.
By Jessie Hewitson
OK so I want to start by saying the cover and title of this book really put me off. It felt a little too ‘self helpy’ for my liking and although I needed guidance I want quite ready for the self help section of amazon if you know what I mean.
The book itself was recommended on multiple sites and Facebook pages for parents ‘finding their feet’ in the turbulent waters of ASD.
It wasn’t until Debs told me to read it did I buy it… well almost. I put it in my Amazon basket and decided I was ready a few months later.
My review may come across a little scatty but I am writing it as I read and I have a nasty habit of putting books down and forgetting they exist. (9 months I tried to Big Little Lies and still never finished it.) Don’t get me wrong I love reading but I have to really be enthralled by the characters or story line for it keep me interested. Now Harry potter is a book I can read over and over again. In fact I had read all 7 books to William before he turned one. We even read Cursed Child but we try not to discuss that monstrosity in this house.
I want to kick my review off with a quote from one of the first pages in her book.
I should have read this book a year ago and I’m not the only one. I couldn’t put the book down for the first few chapters which is always a great sign.
Have any of you heard of Donald Triplett?
Well neither had I!
This is Donald Triplett.
He was the first ever person to be officially diagnosed with autism.
Case number 1. Numero uno. Patient zero.
His parents were told to put him in an institution… and they did!!! Can you imagine giving up on your child like that? I can only imagine what was going on in their head.
Thankfully after a year they went back to collect him. He was their child not a puppy you can return to the pound.
Donald is now 87 years old. He has had a successful career as a bank teller, drives his own car and enjoys travelling the world. Donald is an inspiration to anyone with autism and hope from any parent of a child with autism who thinks its no longer possible for their child to live a ‘normal’ life. My advice to those parents and believe me its something I have to remind myself is to think of Donald.
When things get exceptionally tough and my head goes to all those dark thoughts about things William might never do. I need to remind myself to think of Donald.
If you have read our post about the poem entitled Welcome to Holland you will understand why this next exert really resonates with me. If you haven’t read it then click the clink 😊
The book has introduced me to the term ‘Refrigerator Mother’
in 1949 Leo Kanner (who diagnosed Donald) suggested that autism was a response to a lack of maternal warmth, in fact he went as far to condemn parents of autistic children. Bruno Bettleheim took this theory and ran with it resulting in the ‘Refrigerator Mother’ theory becoming the mainstream consensus as a reason for autism.
Thank God this was way before my time because I feel irrationally guilty now but imagine if someone had told me it was all my fault because I didn’t love my child enough. It would be devastating. My heart breaks for all the mother back then who already struggled to bond with their babies.
It wasn’t until the 70s when 2 British doctors; Lorna Wing and Judith Gould developed a better understanding of autism. Lorna who had a daughter with autism knew firsthand that the ‘Refrigerator Mother’ theory was absolute bullshit and set out to prove both Kanner and Bettleheim wrong.
She concluded that autism was in fact a spectrum meaning it was most definitely not as rare as her predecessors had claimed.
The two men had started the job of establishing what autism is but like any job, the men (or at least Dave anyways) never finished it and the women got fed up of waiting so finished it themselves.
Before you jump on me… there was a hole in my bedroom wall for two years that I eventually fixed 🤣
Jessie talks in depth about building a team. This team helps both parents and child and can include professionals, friends or family members and its made me think of our team and how its members came to us in the most surprising ways.
First on our team is my amazing mother (honestly look at her, how beautiful is she?!) and our best friend Debs.
Both from day one slowly dripped into our ears that something wasn’t quite right, William wasn’t meeting his milestones and originally they could be laughed off with a joke ‘Oh he’s just lazy like his dad’
I’m not going to lie either they weren’t always met with nice responses and I remember yelling at my mom through tears ‘don’t you think I know!’ and I cringe thinking of that conversation now because even though I was angry it was probably the first time I admitted out loud something was wrong.
Ian, I’m not going to lie I have known him for probably over a decade but we had never been ‘friends’ until maybe about 2 years ago. He was kind enough to drive me home from work when I got stuck for a bus. It took a few journeys before broaching the subject of his little boy and asking not so subtle questions… ‘When did you first know?’
Well its safe to say he saw straight through me and soon our chats about our children’s development became a regular occurrence and were something I looked forward to as I could speak openly without being judged.
Fast forward to present day and Ian has done so much for us whether it is letting us know what certain acronyms mean, what processes need to be followed or what help we can get and from where. Only the other day he spent 45 mins on the phone with me helping me fill out a form and recommending drinking cups that William wont chew through 😬
I can safely say that I am ashamed it took me so long to get to know Ian as in his own words he is skilled at being a good person and a fucking arsehole at the same time!
My sister H who listened to me bitch and moan when the comments about Williams development stopped being subtle. Who has answered the phone and celebrated with me every time I have cried and laughed because William looked at me or touched bread or did something that other parents see every day.
Emma, Tish & Danielle who are always on hand to listen to me rant and are Willing to spend their free time doing William friendly activities that don’t necessarily keep their own children entertained.
These are but a few people but there are so many more.
Everyone that asks after William, thinks of him and those that read our blog are all supporting us and we are so grateful for each and everyone of you. I don’t think we could be so open about our journey with out you all.
The professionals involved are equally amazing, Laura, Linda and Val are his amazing support team at nursery. We have recently been contacted by our local school nursery as we had put his name down for a place before we have even moved house. It’s that close I could literally throw William like rugby ball from the front door and he would be there. We have decided we no longer want a place for him, not just because he wont be going to the school but the ladies at his current nursery have been amazing and William has bonded with each of them. Why mess with perfection?
Lisa from the council who attends ever meeting and has called to check in with us during this pandemic to make sure the three of us were doing OK. Not to mention responding to my slightly panicked emails about the recent EHCP announcement.
Sarah, a real life wonder woman! Our health visitor is truly amazing. I really hope her other families appreciate her as much as we do. We couldn’t have done half and a quarter of what we have without her. We moved house and even though we are outside her ‘jurisdiction’ she has stayed with us and continues to turn up to all of Williams meetings despite being over worked.
Jessie explains that it will take a very long time to fully establish your team both personal and professional. I know as William gets older his professional help will change to match his needs and our personal one may differ as people flit in and out of our lives and we are trying to prepare for it as daunting as it may be. William isn’t the only one in our family who doesn’t adapt well to change 😳
Children from BAME communities are less likely to be diagnosed with autism than white children. There are massive racial disparities when it comes to obtaining an ASD diagnosis. Hispanic children are 65% less likely and black children 19% less likely to receive an autism diagnosis than a white child.
Jessie explains in her book that she found pretty much nothing in relation to autism within the BAME communities. Not because it is less prevalent within their race but because there are certain barriers.
Some languages do not have a word or phrase for Autism and a Somali parent is quoted stating her family and friend refer to their daughter as ‘Crazy Girl’ (If you read our post about vaccines you will recall Andrew Wakefield preying on a Somali community which resulted in an out break of measles.) It is not uncommon that families will not have access to an interpreter for their meetings meaning and that they will be forced to rely on relatives, friends or often children to interpret meetings they do not necessarily understand.
Vanessa Bobb states there is a real fear that within her community that this is just another label for black boys. The misdiagnosis of African-American children is FIVE TIMES higher than that of any other race! Five times? Is there that much of a difference between white children and black children? I don’t think so!
Jessie explains that she uses list to organise her life and her sons. I love Jessie for this! I also love lists! I have lists about lists, lists about when William has had a bowel movement, lists about when he has slept through the night, honestly I fucking love lists! They not only help me with William but they also help me function in day to day life.
Parents often lose hope and according to Dr Stella Acquarone it is her job as a professional to tell parents that it is going to be a good life for both them and their child.
It was only today that I filled out our ‘Parents View’ form for our PCP meeting which is to support our EHCP application. The final section asks ‘What are your hopes and aspirations for your child’s future?’ and our only answer was for him to be happy. We don’t want him to be rich or famous. Just happy.
Isn’t that what we all want for our children? Why should it be different if our children are autistic?
Jessie explains that she started writing Chapter 8 – learning to play by discussing the best ways to teach your child to play with you but eventually scrapped that idea because in her words.
She spoke about putting on a show, this is something all parents do but for parents of autistic children it is exceptionally hard. By doing this you are focusing your energy on yourself and not in spending time with your child. I am guilty of this. I have tried to put on a show. Look at my normal little family doing this, look at this… its all fake.
She describes waiting for her son to start behaving normally. Something we still find ourselves doing. By waiting for something to happen you can potentially miss what is actually happening around you.
The book fully listed pro’s and cons of different types of schooling. A must read section for anyone with a child starting their school applications soon.
I do wish there were clear instructions in regards to what to do with schooling but I know that’s not possible. What works for one child wouldn’t necessarily work for another. I just worry that we will make the wrong decisions but I suppose every parent has that worry whether their child is autistic or not.
We believe based on Williams need that a special school would be the best fit for him and the pro’s and con’s have solidified that for us. There is even a handy list of questions to ask when viewing a special school which I will most definitely transfer to my trusty notebook when the time is right to visit.
Mind Blowing Facts about Funding!
Mainstream schools receive £6,000 per year for per pupil with SEN. 💰
Special schools receive £10,000 per pupil per year. 💰
If the schools feel this funding isn’t adequate they can appeal for more.
I have already read many horror stories about local authorities and how little support the give families with children with SEN. Jessie states that when she is in her exercise class and partakes in boxing that she she doesn’t picture a person to punch but in fact pictures her local authority.
I want to share her story of obtaining an EHCP document, I have shortened it a little as I have used that many exerts in this review that I may as well have just scanned each and every page for you.
- The journey starts and the document states black is white.
- But black obviously isn’t white so you call them to correct it but no one ever answers.
- You resort to email and wait for a reply.
Finally when it arrives it states that black is definitely white.
- You have to reply and explain the law states black is actually black.
- They never reply and you have to hound them.
- When they finally respond they tell you its going to their SEN panel for discussion
This can take up yo a month and yet you still have to hound them for an answer.
- The panel agrees that black is white
- You are forced to go to a tribunal in which the council drag out the process with £1000’s of tax payer money. Money that could be better spent elsewhere.
- It is finally settled by a 2 person panel who advise black is black. It was always black.
- White was never black.
But it was in fact a cheaper colour than black and the local authority hoped you would give up.
- This isn’t the end.
renegotiation’s of what colour black is must take place at least once a year.
We are just dipping our toes into the murky waters of the EHCP process and we really need black to be black but we are prepared to fight if we need to.
According to Jessie the EHCP process should take 6 weeks but only 58% of local authorities can stick to this time frame. We have been told it can take up to 10 weeks so I am presuming that it has been a long time since Hull has been in the 58%
Some local authorities decline all EHCP requests upon first application in a disgusting way to manage their workload hoping the parents wont try again.
The devil is in the (lack of) detail
EHCPs can be vague leaving them open to interpretation meaning it can sound like they are going to provide all the support your child needs but the way in which it is worded can mean they will only get a fraction of this support. They need to be exceptional detailed with time frames and what if’s.
I think this book is a must read to any parent who has or suspects they have an autistic child. Its a really well written manual of what is to be expected and prepares you for the pitfalls of ‘support’ you will receive from the authorities.
Some of the sections weren’t relevant to William due to his specific difficulties but as autism a spectrum this book would have been a hell of a lot bigger than its 284 pages should she have researched and included every possible scenario for an autistic child.
The book is absolutely brilliant and touched on or delved into so many subjects that I now feel a little more confident having read it and confidence is something a parent of an autistic child often lacks. I feel over the coming years this book will be highlighted, dogeared and full of scribbles as I feel we will be pulling it out before each new leg of our journey. Thank you Jessie! 👏