When your child is diagnosed with autism and then dumped

img_6296When I broke the news on my social media that my child had just been diagnosed with autism spectrum disorder I had a mixture of comments. Some people were sympathetic, others shocked, and others commented along the lines of ‘this should help you get him all the help and support now.’

It is incredibly common to hear that. But it is a myth.

Both of my children were diagnosed with autism and then dumped.

Having a diagnosis has not enabled them to get the support they need.

Even with a diagnosis my non verbal son still can’t access NHS speech therapy.

Even with a diagnosis neither of them are currently receiving occupation therapy despite both of them having acute sensory needs and neither able to do self care such as dressing themselves.

In actual fact BECAUSE my daughter has a diagnosis of autism she has actually been REFUSED access to mental health services.

They have been discharged by educational psychologists claiming there is no need for ongoing support.

Despite being diagnosed their educational support plans are continually threatened with closure.

Even our trusted community paediatrician who has been monitoring their development for almost 8 years is suggesting discharge since there is apparently little more she can do to help.

On the actual day of diagnosis we were handed and leaflet and sent on our way. This is happening to so many thousands of others and it needs to stop. Families are emotionally vulnerable, confused, desperate for support and looking for hope. One leaflet is not ok.

IMG_2182My children had more professional support BEFORE they were diagnosed than they have had after!

Before they were diagnosed we had an abundance of meetings, successful claims for dla with huge backing from every professional we came into contact with, access to specialist nursery provision, comprehensive educational support plans in place for them both, a weekly visit from a learning support teacher, fortnightly speech and language and physiotherapist and occupational therapists support. We had six monthly paediatrician clinics and referrals to any other services we needed.

After diagnosis everyone seemed keen to discharge us.

We were diagnosed and just dumped.

We are not alone.

The system seems to come to a crescendo after diagnosis then leave families hanging…alone, confused and vulnerable.

No wonder so many autism families feel let down and despondent.

We were build up and emotionally prepared for diagnosis only to be ignored afterwards.

Families need much more than a leaflet when their child is diagnosed and better ongoing support needs to be in place.

Only then can we perhaps stop this awful policy of diagnosis children and dumping them.

This article first appeared here

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When You Still Get Flashbacks To Diagnosis Day

img_0034Some days stay in your memory for a long time; the day you gave birth, your wedding day perhaps, or even the day you graduated from high school or university. Unfortunately for me one of the days that is stuck in my mind is the day my precious son was diagnosed with autism. I am not alone in that either.

I put it to the back of my head most days. I rarely read the report I was sent as it always brings me to tears. Time passes. My child grows and develops, but still some days I look at him and I am right back there in that waiting room when he was at just three years old waiting on his final assessment for a life long diagnosis. I knew before they said the words. I thought my heart and my mind were prepared. It turns out I was wrong.

I was utterly devastated to hear my son had autism.

People tell me I should not have felt like that. I have been told that he would pick up on my feelings and feel rejected, that autism is just a different way of processing things and that my son is still the wonderful boy he was before that day.

I still cried.

I cried for the child I thought I would have. I cried out of fear and worry. I cried at the thought my son would struggle more than I ever wanted him to. I cried that my instincts as a mother had been right all along. I cried not for my son..I cried for me.

Autism was something that would stay with my son all his life. That can be difficult to comprehend when your child is not even at school yet.

When he was diagnosed he was only just walking. He had no language and little awareness of the world around him. He didn’t know his own name. I had no idea if or when any of that would change. He was diagnosed and then we went home. No-one offered me hope.

It was a dark day.

I could take you to that building even now despite four years and five months having passed since we were there. I still see the waiting room in my mind, I can smell the sterilised toys and the wiped down plastic seats, I can hear the voice calling my sons name. It was like time stood still that day.

As my beautiful boy sat in yet another waiting room last week, on yet another plastic chair, I had a moment of flashback to diagnosis day again. Except this time I didn’t cry at the memory, it was more of a shadow in the background.

It has truthfully taken me many years to get to that point. Some days I hate even being referred to as ‘am autism mum’ as that just makes me think back to that defining day when they mentioned autism for the first time.

My son has autism. I can say that now.

Today I say that with pride and a smile. My son is still non verbal, still not potty trained and still requires round the clock care. He has no idea of what happened the day he was diagnosed and probably never will. That day in 2012 never affected him in any way, but it defined me as a parent.

Wether you have fought for the day for a long time, or came away from the appointment in total shock, diagnosis day is huge.

I know I am not the only parent who has taken years to process my sons diagnosis. I am not the only person to have flashbacks to the day they told me my son had a life long condition with no cure.

So what helped me the most to stop those flashbacks and memories from taking over? Hearing this brown eyes boys laugh, watching him smile and realising that he may have autism but autism in no way defines him.

We are doing ok. We are a team. I help him and he helps me too. He is replacing the memory of that day with better memories every single day of his life. I hope I get flashbacks to his hugs for many years to come.

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Raising A Child With Autism Who Has Too Much Empathy

 

 

 

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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.

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