Never Underestimate Anyone, However Much They Struggle

2020 has been a year most want to forget but even more so for my family. Even before any virus was in the news my family faced difficulties. Back in January my elderly mum fell and broke her femur.

After an operation and a stay in hospital I went from full time caring for two disabled children and carer for my husband to also being full time carer for my mum.

At 75 her recovery has been long and painful and my children have had to adapt to granny not being able to do many of the things she did before, which hasn’t been easy for them as their own struggles and autism make adapting to change hard.

For my 11 year old son it’s been especially hard. He is non verbal with significantly high care needs himself. Unable to read or write, severely autistic with learning disabilities, epileptic and with a large mass on his brain, coupled with vision impairment and a progressive genetic condition, he very much lives in the moment and, so everyone thought, is pretty much unable to imagine the difficulties of another person.

But one day he showed us all why we should never underestimate anyone, regardless how much they appear to struggle.

I had my mum with me as I was taking Isaac to the park. He ran ahead, as always, giggling and flapping with excitement. He didn’t look back once as he headed for the gate, pulled it open and headed for the familiar frames and slides. Seeing him ahead and knowing he was safe I supported my elderly mum so she could see her grandson playing.

Isaac did his familiar (and very rigid) routine, climbing up the smaller easier equipment and sliding down the slide built for children half his age. He then moved to another area, circling the equipment as he always does and flapping. Eager to enjoy her grandson at play my mum ventured down to where Isaac was.

But then Isaac decided his rituals were complete and he began to make his way back up and towards the gate as I watched from nearby. I was torn now between helping my elderly mum with mobility difficulties or chasing my vulnerable non verbal son who has no sense of danger.

But just then my mum called to her grandson:

‘Isaac wait for gran! I need help. Gran has a sore leg.’

As I waited to stop my son escaping so I could help my mum I watched in astonishment as my son stopped, turned and paused. What happened next blew me away and has taught me a lesson I will never forget.

My son, the most unlikely helper, a child still fully dependent on help himself, unable to verbally communicate, not able to read or write at 11, processed the pain and need for help of another person and responded perfectly. He turned and headed right back to his own elderly gran, reached out and took her hand, and guided her safely back through the park.

As I ran down planning to step in and help I found I wasn’t needed so I just took my phone out and snapped this beautiful picture to always remind myself to never ever limit my child again.

Yes my 11 year old is autistic. Yes he’s non verbal. He absolutely has significant and high care needs and always will. He’ll always need 24/7 care.

But that’s not all he is. He’s also a compassionate, loving, wonderful boy who can show the world that we should never limit anyone, regardless what difficulties or struggles they face in life.

Everyone has potential, even the ones who appear to struggle the most.

Can You Be Severely Autistic And Still Have Empathy?

I admit I have had to get professional support to help me as a parent of a child with severe autism.

I didn’t expect to have a child who could not talk, or who would have severe learning difficulties or scream for hours. I was unprepared for the lack of sleeping, the rigidity of routine, the huge struggles to communicate and the life long high level of care he needs.

I also didn’t expect the professional misunderstandings either.

Please don’t judge me but in my endeavour to help my son I assumed that what these highly trained professionals were telling me was correct. Things like:

That behaviour needs stopped because it’s controlling.’

‘It’s extreme sensory seeking and you can’t let him do that!’

‘He needs to be taught strict boundaries.’

‘His behaviour is having a negative and destructive impact on his sister so you need to do somethings out that.’

‘It’s because he has severe anxiety and needs to be in control.’

‘You need to learn to accept he has severe autism and this is just how it is.’

Now I am not saying these are all wrong, or don’t apply to my son, but recently I have been thinking about my son differently though I had no idea how controversial my idea would be.

Could my severely autistic son’s behaviours actually be due to him being very empathetic?

My son has no functional speech. While he can say ‘mummy’ if asked to repeat it or asked a simple question he understands like ‘whose car do you want to go in?’, and he can say ‘no’ when asked simple direct questions using vocabulary he is familiar with, he can’t tell me why he does certain things or why he gets so distressed about other things.

For years people have been trying to ‘guess’ based on their knowledge of autism, or learning difficulties or sensory issues. I was told my son was locked in his own world, consumed with his own thoughts, controlled by anxiety and aware only of his own needs.

When I suggested recently I thought he was actually the loveliest, most empathetic, most caring little boy ever I was looked at as if I had lost the plot.

I shared with a mental health nurse who specialises in challenging behaviour, severe anxiety and learning difficulties the story last week of how my son woke up very early and was making a huge amount of noise and mess in the bathroom removing his myriad of bath toys he has to have in the bath, spilling water everywhere and waking everyone up. Of course I could predict that she suggested he had huge unmet sensory needs and I should try and incorporate more water play to his schedule. It was also suggested he had some type of clock in his room to master when he could get up so as not to disturb everyone else, and other ways to curb and mould his behaviour.

Then I suggested something radical:

I think my son was actually showing concern for others, wanting to help and showing love!

The previous evening I had went over the next days routine. It had started with his sister having a bath, something I knew my son struggled with. My non verbal severely autistic son wasn’t trying to sensory seek, or deliberately wake us all up or control everything: he was taking his toys out the bath to HELP because he CARES about his sister and thought about her the moment he woke.

I started to think about some other behaviours. Could those actually be because he cares deeply for others?

He screams if his sister has socks on when wearing pyjamas. Could it be he himself finds socks uncomfortable and doesn’t want his sister to experience that?

He becomes very agitated if I don’t remove mugs of tea or coffee or glasses of juice immediately after meals. Could it be he knows these could spill and he’s trying to protect us all from wet clothes and wet floors?

He has to be first in the house and first out the house every time or he self harms and screams. Could it be he cares about us all so much he is wanting to make sure everything is ok before the rest of us venture in or out?

He spent years becoming so agitated and distressed at open doors, mostly outside house doors that he felt should be closed? Could it be he wanted to protect others from intruders, the weather or noise? All things he himself struggles with so would naturally want others to be protected from.

He has to have a bath at 6pm regardless what else is going on around him. Could it be he is trying to help us all feel reassured and comforted with familiarity against a world of chaos? Could he be bringing predictability back to help us all feel calmer and more secure?

Of course I can’t say for definite if my interpretation of my son’s behaviours is true because he can’t tell me. However looking at things from the viewpoint that he cares and loves us all and wants to help us has been life changing for him and everyone else.

We used to joke in my house that life revolved around my son. His needs had to come first and we all had to learn to be empathetic and adapt to him. But maybe, just maybe we are doing children like my son a huge injustice.

Can you be severely autistic and still have empathy?

Can you be Scottish and still love English tea?

Why of course you can and the sooner we all realise that severe autism does not mean they only think about themselves then the better things will be for everyone.

Assume people care. Assume they are trying to help.

Always try and see the positive even if others tell you not to.

Raising A Child With Autism Who Has Too Much Empathy

 

 

 

img_0055

There is a commonly held belief in society that people with autism lack empathy. Every time I hear this statement I wonder if they have met my daughter.

I am raising a child diagnosed with autism who actually struggles with TOO MUCH EMPATHY.

Here is what it is like:

A few months ago I received a call from the office at my daughter’s school. Due to her autism my daughter struggles with huge anxiety and selective mutism. The school were calling to say my daughter was very upset but they could not work out why. I went down to the school expecting her to have been injured or perhaps bullied. Neither of these were true. My daughter was highly distressed in school because she had witnessed her friend fall over in the playground and cut herself. Long after her friend had had her wound cleaned up, dressed and returned to the classroom, my little girl was still crying for her friend. She later told me she felt as if her own leg had been cut and worried that her friend may have still been in pain. She took on another persons pain and tried to carry that for them. That is the deepest sort of empathy you can ever get.

Prior to this a few weeks before she had walked home from school with me very quietly and deep in thought. She looked like a child who had been in trouble at school that day and who was carrying the burden of guilt. Since she is a child who would never once consider breaking any rules I was naturally worried why she was so downcast. She spent the entire night withdrawn until at bedtime she broke down in tears in my arms. Another child had been moved down the behaviour chart to red that day and her tender heart was utterly broken for them. She truly felt every emotion you would have expected had it been herself it had happened to. She was disappointed, angry, upset and confused. She had this huge amount of stress on her shoulders that didn’t even belong to her yet she had no means of taking any of it away. Despite the crime not being her doing she was determined to punish herself for the wrong doing of another person. As admirable and self sacrificing as that is it is so unhealthy for any 8 year old to bear.

My daughter with autism takes everything to heart. She feels the pain of others like it has been done directly to herself. If someone shouts at anyone and she hears it she feels that voice piecing her fragile self worth like they were shouting directly at her. She takes on blame that is not hers. If I have her at the doctors and someone sneezes she feels responsible and begs me to make them better.

It is harder to live with a child who has too much empathy than not enough. Why? Because you can teach a child to understand the pain of others but it is so much harder to teach them to let the pain of others go when it does not belong to them. You can teach children to care but how do you teach them to stop caring when they care too much?

Having an over empathetic child on the autism spectrum means living with a perfectionist. You see she not only needs to be perfect for herself to prevent disapproval from others but she also feels she has to be perfect for everyone else too so that everyone around her is happy, safe and well.

img_0043The consequences of that are mental health issues, low self esteem and a vulnerability that worries me as a parent so much.

It is vitally important that professionals understand this in order to help my daughter and others like her. Over empathy is so misunderstood and ignored but is is real and it is very concerning.

Everyone who meets my daughter comments on her caring and loving nature. As a parent I am so proud of her and amazed at her incredible innate natural ability to reach out and empathise with others but I also worry she takes this to a level that is very unhealthy.

Could you imagine a nurse who feels the pain of every patient she treats? Or a teacher who breaks down every time a child in her class gets something wrong? Or a check out assistant who feels such empathy for every customer they want to pay for everything themselves?

My child’s future depends on professionals and myself helping her. With so much emphasis on the fact people with autism LACK empathy rather than having TOO MUCH empathy sadly I have a battle on my hands for support.

I thought raising a daughter with autism would be difficult but I had no idea how hard it would be to raise a daughter with autism who also struggles with too much empathy.

img_0042