Is the latest research on autism blaming parents or training parents?

Like so many autism parents throughout the UK I woke this morning to emails, messages and social media notifications full of the news that new research published today in the Lancet was apparently claiming some sort of ‘super parenting’ could greatly improve autism.
I read the articles and watched the reports with interest as a parent of two children with autism. My first response was upset, followed by anger that once again it seemed to be implied that poor parenting was the reason for a child with autism not improving. I even wrote this on my own Facebook:

As the reports continued on the media I decided to research directly what this new research was all about. I went to the original source and managed to contact the study leader Professor Jonathan Green. I was privileged to receive communication directly from Jonathan regarding the study and his trial results and I thoroughly read through everything he sent me.

The first thing I realised is that the media were misrepresenting his findings.

Most people will not be overly surprised at this.

Autism parents are particularly used to this, but it still upset me.

As a seasoned autism parent I am well used to the ‘blame the parent’ articles, the ‘latest cure’ ones and the downright ‘false information’ ones. Today’s coverage was a mix of all three at times.

So what did this new research actually reveal in simple terms?
It showed that a group of families with children who had autism and were between age 2-4 years at the start of the trial saw improvements in their child’s autism six year after the trail ended. The ‘trial’ (called pre school autism communication trial or PACT) was an intensive 12 month parenting type course where parents were given tasks to carry out with their child while being filmed and then therapists worked to train the parents on how to improve their interaction and development with their child. Parents then had to also carry out the same tasks with their child at home to ‘practise’ daily for around half an hour a day.

The study was in no way implying parents were actually to blame for their child’s autism but in actually fact believing in the parents as the best advocates and teachers for their own child.

As an autism parent I have always known that early intervention was proven to help children. I fought to get my own children this type of help myself even though it has made little difference to my own severely autistic and non verbal son. All parents want to give their child the best start possible.

But what today’s new research has proven is this:

By helping and supporting parents and working with them a child with autism has the best chance of improving. Did we really need research to prove that?

It also has shown that even six years after training us parents are still wonderful at dealing with our children and we are able to make a lasting and tangible difference in our children’s lives. Well what do you know!

Apparently the NHS is looking at this study to implement it as soon as possible. Should we as parents be worried we are once again going to be blamed for our child’s autism or should we be delighted at the new training?

If the therapists are trained, understanding and dedicated I can see many thousands of families benefitting from a 12 month course. There are similar courses already established such as Hanen more than words and NAS early bird. It seems these are very similar but not long enough?

My worry about today’s findings is that therapists may become even less child centred and more focussed on parents. We may find therapies even harder to obtain as the trend becomes even more ‘leave it to the parents’ which is not at all helpful and not in any way what the research published today wanted.

Finally my advice to other autism parents today would be: this isn’t a cure. Despite what the media suggest these children did not suddenly go from severely autistic to mildly autistic after a magical parenting course. They still had autism they just developed as a result of having parents who dedicated time and energy to them in order to help them.

And there’s the thing: the very fact you read today’s articles and this blog shows you also want the best for YOUR child too.

I am certain if parent dedication and love could be somehow recorded ever researcher would come to the same conclusion as me: the love of a parent make a huge difference to a child wether they have autism or not.

What my autistic daughter taught me about empathy

There is a widely held belief that those on the autistic spectrum lack empathy. It is often referred to by technical names such as ‘lack of theory of mind’ or even ‘mind blindness…

Source: What my autistic daughter taught me about empathy

What my autistic daughter taught me about empathy

There is a widely held belief that those on the autistic spectrum lack empathy. It is often referred to by technical names such as ‘lack of theory of mind‘ or even ‘mind blindness‘,  both meaning that a person with autism appears to lack the ability to understand the emotions, thoughts and actions of others. In other words they find it very difficult to put themselves in another person’s shoes.

Some examples of this could be laughing at someone who is clearly upset, saying things that could appear as socially inappropriate, or misinterpreting jokes.

A few nights ago though my autistic daughter said something to me about empathy that has taught me so much.

We were reading a book together before bed. It was one of her reading books from school and from a well used reading scheme. At the end of the story there are some basic comprehension questions and that night I decided to ask her them.

Part of the story involved some children hiding under a staircase in the dark as a villain came searching for them. The children had to stay quiet to avoid being caught. The question read: ‘how do you think the children felt when they were hiding from the villain?’

As an adult I thought this would be pretty obvious. But my seven year old daughter’s answer was nothing like I expected.

She took a moment to think. Then she looked up and said quite simply:

“How am I supposed to know that mum? I can’t ask them!”

What to many would be a fairly typical response from a child with autism actually made me think.

Much of what we see as empathy is actually assumption. The Cambridge dictionary defines empathy as “the ability to share someone else’s feelings or experiences by imagining what it would be like to be in that person’s situation”

We have to imagine what another person MIGHT be feeling. We base our opinions on our own experiences and feelings and assume the other person could be feeling the same. We are guessing!

My daughter struggles with social imagination like so many with autism. But that does NOT mean she doesn’t care. It does NOT mean she has no sympathy or feelings towards others. She just doesn’t want to ASSUME, so she has found the perfect way to overcome that: ask them how they are feeling.

How often in life do we assume someone is sad or lonely just because they are sitting by themselves? How many times have we mistaken a smile for happiness? We are all unique complex human beings with complicated emotions and feelings. We deal with life events in very different ways. We can say we empathise with someone based on the fact we imagine they feel how we would in the same position. But in fact they could feel completely differently.

While it may be socially inappropriate to ask someone at a funeral if they are sad, there are times when asking others how they feel is much better than assuming. Asking enables them to express themselves and connects us far better than presumption does.

I thought I was pretty good at empathy. I would have said those children were frightened or worried hiding under the stairs but if I asked them they may have actually been excited, cramped or even thirsty? As my daughter said, how are we supposed to truly know if we don’t ask?

This week I have found myself asking others simple questions rather than presuming I know how they could be feeling: How are you doing? How are you feeling? Are you ok?

Many of the answers are nothing like I would have imagined.

My daughter may struggle with empathy in some ways but she has taught me so much about it in ways I would never imagine.

Empathy is wonderful but sometimes asking how someone truly feels is even better!

 

When the local children mocked my son with special needs

For months we had watched a new children’s play park being build behind our house. We had walked along to see it with excitement and I checked the plans to see what equipment would be suitabl…

Source: When the local children mocked my son with special needs

When the local children mocked my son with special needs

For months we had watched a new children’s play park being build behind our house. We had walked along to see it with excitement and I checked the plans to see what equipment would be suitable for my children, especially for my son who has significant support needs.

I saw advertisements for an opening event but knew this would be more than both my children with autism would be able to cope with, so I never mentioned it to my daughter. Instead, later that evening when the event was over, I put their socks and shoes on and surprised them with a walk around to the new park for the first time.

There were no roads to cross but I still had to hold both their hands tightly since neither has any awareness of danger, but once in the enclosed park I allowed my son to run ahead flapping with excitement. I opened the gate and guided the children in. It was early evening but still daylight and it was no surprise that they were the youngest children there. The park was busy and noisy though with older children and teenagers, yet not one parent in sight. I was unsure if my children would cope but what happened next made me realise that it would not be my children who would struggle but actually me!

 

 

As my son laughed and walked around stimming I helped my daughter climb to get to the slide. As she climbed up a bunch of children ran towards her shouting, having climbed up the slide and over the top of the frame she was on. I looked round to see another bunch of children running in circles around my son laughing in his face. My children were shocked and scared. They had come to play not be tormented in their local playground!

The more I asked the older kids to leave my children alone the more they seemed to annoy them. They spun the roundabout with my son on far quicker than he was happy with making him scream. They mocked his stimming and noises and ran amok round all the swings and apparatus. It was as if they saw how vulnerable my children were and that made them an instant target. It was awful.

I shouted at them to stop. There were no adults around and the kids were clearly not caring. They poked at my son, knocked into him and climbed on whatever he was playing on. My non verbal son with vision impairment and severe autism was oblivious to what they were doing. The more he made noises and flapped the more they laughed and pointed. His twin sister thought they were being ‘silly’ and kept asking why big children were in a little kids park.

I played with my children and tried to ignore them. I took ‘happy pics’ and planned to post them to Facebook when I got home. People don’t like hearing the bad stuff so I was just going to head those pics up with ‘fun in the park’. My children did have fun. Unfortunately for them other children also had fun at their expense.

I wonder if the parents of those older children have any idea what their kids were up to that Saturday evening? My twins are unaware of what really happened that night, but I am. In an era where disability awareness is common place and inclusion in schools is the norm it scares me that other children still see bullying and mocking kids with special needs something entertaining.

My local authority website boasts that this new park has equipment that is ‘inclusive’ for all children. They have changed some apparatus but sadly we still have a long way to go to change attitudes before I can once again take my children to the park without fear of local children mocking my son with special needs.

We will be back at that park soon. My son will once again flap, spin and make noises. My daughter will want in the baby swing and will sit on the roundabout with her brother. She will go down the slide again and again and again. My children thrive with repetition. Let’s just hope the local children don’t repeat the bullying I witnessed of my son last weekend.

The park changed. Now it is time to change hearts and minds too.

Dealing with criticism

Welcome to my second ever guest post. This post was sent to me by someone I know well and who follows my blog. As a fellow blogger, and now successful author of a book, Jonathan has had his fair share of criticism and bad comments. Here he shares how best to deal with them.  We can all learn from this!

Dealing With Criticism

Take a bus with three children under five and you will instantly get a reaction. There are the vacant stares, the enthusiastic smiles and, of course, the grim glowers of disapproval. In fact, whatever you do, if it is worthwhile or slightly abnormal, there will be critics. Once we accept that, we have to figure out what to do with them.

Since burning them at the stake, filling their shoes with silly string and torturing them with Barry Manilow songs are all against the law or impractical, we need to find something more constructive. As a dad of three, PhD graduate, interpreter and writer, I have had my fair share of rejections and criticisms and knocks.

One of the first lessons I learned about criticism, and one I am still learning, is that criticism needs to be put into context. So, for example, if you have written a book that a hundred people love, it doesn’t make any sense to get caught up in the views of one person. If you have two children whom you love and who are managing, then it shouldn’t worry you that one person on a bus or commenting on your blog tries to lob over a few choice words.

Their life isn’t yours and frankly, I doubt they would do as well as it as you are. As much as it seems sometimes that every second person is giving you the stink eye, the truth is that there will likely be people around to encourage you and affirm you. As a Christian, even when I really feel that I can’t find those lovely positive people, I can rest in the love of God. The opinions of one weirdo mean nothing to someone who knows they are already unconditionally loved.

When you hear one person mouthing off, concentrate on the affirmations of those who have been praising you. When you get one catty remark, just remember that someone else’s opinion of what you are doing is not the same as your own incredible value. Let me tell you now, you are valuable and cherished and living a worthwhile life and anyone who can’t see it is not worth listening to!

Once you learn to contextualise criticism, you start realising that there are two types of critics. The first, and oddly the most annoying, are the helpful critics. The people who care about you and want the best for you. They only ever share a correction to keep you on the right track and even if they get things wrong, you know they mean well.

Why are they so annoying? Precisely because, in the majority of cases, it helps to listen to them and you find yourself with an adjustment to make or some advice to take on board. There is nothing worse than actually realising that you still need to learn teachability and humility. Or maybe that’s just me! 😉

The other type of critic doesn’t really need a name, although you can suggest one in the comments if you like. At best, they are unhelpful, at worse, they are destructive. They are the people who see you out with a double-buggy and ask if you know where children come from (if you didn’t before…). They are the people who tell you your work should be thrown in the bin or your children are awful or…

It’s for those people that you need to exercise patience and memorise two rules. The first is that, as marketing expert Seth Godin says, being criticised for something is better than no one bothering to talk about it. Take the criticism as a badge of honour. You are doing something worthwhile that others feel is worth remarking about. Wear the badge of criticism with pride.

The second comes from Bill Hybels and still makes me take a sharp intake of breath. He argues that, even with the meanest, most unkind critic, we need to try to find the critic’s grain of truth. Maybe that stern look in the supermarket from a perfect stranger could be a reminder to react less to childish behaviour. Perhaps the odd look from the old lady on the bus reminds you of the challenge you have taken on and how much of yourself it will take to just get from day to day.

Even the harshest critic can teach us something. The biggest thing I am learning from my critics is that I still put too much importance of other people’s opinions and still tend to put too much of my value in the things I do or create. If I measure my self-worth by how well my children are behaving today or worse, how well I am behaving today, I am not likely to get anywhere.

As I learn to separate who I am from the things I do, I realise that I can change what I do more easily. And once I know that I can grow, I realise that others are on the same journey. We all have bad days, grouchy moments and get annoyed when things don’t go our way. We are all growing. Whenever I remember that and I remember that I am loved while I am not there yet, the criticism doesn’t affect me nearly as much.

I still want to buy some silly string, though!

———–

Jonathan Downie home schools three children under five with his wife Helen, whist being a full time conference interpreter, researcher, author and speaker. He is based in Edinburgh, Scotland. He can be found at:

Twitter: @jonathanddownie (personal), @integlangsbiz (work)
Linkedin: https://uk.linkedin.com/in/jonathandownie

Website: http://www.integritylanguages.co.uk/

 

 

How setting up a just giving page changed things for my family.

Most of us find it very difficult to ask for help. It is often seen as a sign of weakness in society and a sign that you are desperate. Recently I found myself asking for help for that very reason;…

Source: How setting up a just giving page changed things for my family.

How setting up a just giving page changed things for my family.

Most of us find it very difficult to ask for help. It is often seen as a sign of weakness in society and a sign that you are desperate.

Recently I found myself asking for help for that very reason; I was desperate.

I had to let go of my pride and allow others the opportunity to support me.

 

We were going through a time of crisis as a family as my son’s MRI results showed upsetting results with his eye sight. As well as autism my son has the genetic condition neurofibromatosis type 1 and a routine scan showed one eye has microphthalmia and his other eye has an optic glioma. Both are very significant conditions that require long term care and close maintenance and both can leave him blind. Currently one eye has next to no vision already.
He is non verbal with classic autism. He has global developmental delay and sensory processing difficulties. He has severe learning difficulties. Life is not easy for him.

My daughter also has autism and huge anxiety. She has mental health struggles and an eating disorder.

Both children require a lot of support and I am a full time carer for them.

My sons challenging behaviour and my daughters anxiety meant they would both benefit enormously from a room to relax and chill out in. We were regulars at special needs places and I knew both of them loved visiting sensory rooms. I wondered if having one of our own would help them.

I looked into costs, funding, ways to build one and equipment that would benefit them both. The financial costs made me cry. Even with funding support it was impossible for us to build a sensory room on our own. Then I came across just giving.

I hesitated.

Was it right to ask others to support us when there are so many other good causes out there? Could I swallow my pride and allow others to help? Would anyone even care?

Almost reluctantly I set up the page and put it on my social media. As people began to give I cried again. With every donation I wanted to hug people. Every email notification on my phone make my heart skip a beat.

Just giving showed me people cared.
Just giving showed me we were not alone.
Just giving enabled people who don’t even know us to invest in my family.
Just giving reconnected me with friends and relatives I had lost contact with as word spread and my image was shared.
Just giving made my dream of a sensory room for my autistic twins come true.

By the end of the 30 days our target was not only met but exceeded. We had a custom build shed made and installed and ordered the equipment with excitement and gratitude.

 

It IS making a difference. More than I ever imagined it would. Every single penny given has been used and has changed my family.

When my son is frustrated he has somewhere to go and calm down that relaxes him and excites him.
When my daughters anxiety gets too overwhelming she has somewhere to go to destress away from people and events that overload her.
It has enhanced and developed their relationship and brought joy to my entire family.

The room will grow with them and change to meet their needs as required.

 

Instead of crying we are now dancing together. We are more relaxed as a family thanks to every single person who clicked ‘donate’ on our page.

Just giving changed my family. It was hard to let people help but so worth it.

Asking for help is not a sign of weakness, it is really a sign of strength. Never be afraid of letting others help make your dream come true.

Just look how happy my children are in the sensory room.

Thank you to everyone who made this possible.