When animals and prisons have more rights than those with autism and learning disabilities

There are some blogs that tear me apart to write. This is one of them.

Today a government report was published with the title “The detention of young people with learning disabilities and/or autism.” You can read the report in full here: https://publications.parliament.uk/pa/jt201920/jtselect/jtrights/121/121.pdf

I read about it in the press today and cried. My own child has autism and learning disabilities. He’s non verbal, epileptic and he is doubly incontinent. I am not ashamed or embarrassed to say that at times his care needs are extreme and I struggle. Reading the introduction Members of Parliament wrote to their own report was like reading a diary and a glimpse into a future that could so easily happen to my family. Could this be your story?

Too often the pathway to detention is predictable. It begins from before diagnosis. A family grows worried about their child. They raise concerns with the GP, and with the nursery or school. It takes ages before they get an assessment and yet more time passes before they get a diagnosis of autism. All that time they struggle on their own with their worries and without help for their child. This pattern continues throughout childhood as families are under-supported and what little help they have falls away when the child reaches the age of 18. Then something happens, perhaps something relatively minor such as a house move or a parent falls temporarily ill. This unsettles the young person and the family struggles to cope. Professionals meet to discuss what should happen, but parents are not asked for their views. Then the child is taken away from their home and the familiarity and routine which is so essential to them. They’re taken miles away and placed with strangers. The parents are desperately concerned. Their concerns are treated as hostile and they are treated as a problem. The young person gets worse and endures physical restraint and solitary confinement – which the institution calls “seclusion”. And the child gets even worse so plans to return home are shelved. The days turn into weeks, then months and in some cases even years.”

The report says “we are inflicting terrible suffering on those detained in mental health hospitals and causing anguish to their distraught families.” It makes recommendations that it says are ‘urgent and not complicated’ but that ‘We have lost confidence that the system is doing what it says it is doing and the regulator’s method of checking is not working.

Let’s stop there for a minute. Here we have some of the most vulnerable people in our society having terrible suffering inflicted on them with our own government saying it has lost faith in its own system to protect them.

Would you believe me if I told you that the 2,250 children and adults with autism and/or learning disabilities detained in such places have LESS rights than animals or even prisoners?

Seriously!

Some basic research into the rights of animals showed me that they had the right to:

• need for a suitable environment

• need for a suitable diet

• need to be able to exhibit normal behaviour patterns

• need to be housed with, or apart, from other animals

• need to be protected from pain, suffering, injury and disease.

So why are children and adults with autism and/or learning disabilities denied a suitable living environment, a suitable diet, the right to exhibit normal behavioural patters, housed appropriately and protected from pain suffering and injury? If we (rightly) wouldn’t accept this treatment of animals why are we accepting it, as a society, for those with autism and/or learning disabilities?

What about prisoners who have committed crimes, broke laws and harmed others…none of which I might add apply to those with autism and/or learning disabilities locked up in these so called hospitals?

Prisons are inspected and prisoners have strict human rights including:

• protection from bullying and racial harassment

• being able to get in contact with a solicitor

• healthcare – including support for a mental health condition

All prisoners should be able to spend between 30 minutes and an hour outside in the open air each day.

Did you see that? Even prisoners MUST have time outside every day. Yet so many of the 2,250 children and young people wrongly detained in hospitals with autism and/or learning disabilities under the mental health act are denied this.

It tears my heart and souls apart to think that an animal or someone who has killed others has more rights than my non verbal autistic son.

I can’t accept that.

Can you?

Are We Diagnosing Learning Disability Often Enough?

Over his ten years of life so far my son has ‘collected’ a fair list of diagnosis. First he was given ‘severe autism with global developmental delay’, then six months later the genetic condition ‘Neurofibromatosis Type 1’, then a few years later two complex eye conditions, a year later a third eye condition (a tumour on his optic nerve), two years later epilepsy and in the last few months cortical dysphasia which at first appeared to be a brain tumour! Every one of those diagnosis was given by medical professionals, geneticists, therapists and neurologists. Yet one diagnosis seemed to just ‘happen’ over time that everyone knew about yet no-one spoke about: learning disability.

I knew my son was ‘behind’ others from as young as a few months old. He was ‘late’ to hold his head, give eye contact, respond to his name, speak, interact with his environment, crawl, walk, use a spoon and so on. There wasn’t anything in fact that he wasn’t late at. Before he was even two years old I was told verbally he had the woolly and hopeful diagnosis of ‘global developmental delay’. Wether intentional or not it very much gave the impression that one magic wonderful day my son would suddenly ‘catch up’ with everyone else and all would be perfect. When autism was talked about that became the ‘dominant’ issue and the global delay was rarely mentioned.

Until suddenly without anyone saying anything I received a standard letter from an appointment listing my son’s diagnosis and on it I read ‘learning disability.’ There was no appointment to diagnose, no waiting list to join and no discussion. His ‘global developmental delay’ just magically changed to ‘learning disability’ and that was it.

Yet for so many others that two worded diagnosis seems to never be mentioned. Why is that?

Party it seems to be due to an increase in genetic knowledge. We can now break down genes to an amazing level and more and more children and adults are being diagnosed with rare genetic conditions. While these conditions remain rare it is common for all ‘symptoms’ including learning disability to be generalised under the umbrella of the genetic condition. While years ago the opposite may have been true and the person had a general learning disability now we see the genetic abnormality to be the cause and therefore often lump everything under that one diagnosis. Perhaps as more people get diagnosed with the same genetic conditions we may find that not everyone with that condition actually has learning disabilities and therefore adding ‘with learning disability’ would be a more helpful addition to any genetic diagnosis.

Another reason seems to be the increase in autism diagnosis. I see more and more children diagnosed on the autism spectrum who do have clear learning disabilities but who can not get the latter diagnosed because of a (wrong) assumption that ‘it’s all part of autism’. Yet according to the National Autistic Association, the leading UK charity for autism here are the facts:

Between 44% – 52% of autistic people may have a learning disability.

Between 48% – 56% of autistic people do not have a learning disability.

Autism, on its own, is NOT a learning disability.

Autism, according to Wikipedia is described as follows: ‘Autism is a developmental disorder characterized by difficulties with social interaction and communication, and by restricted and repetitive behaviour. Parents usually notice signs during the first three years of their child’s life.’

Where as ‘learning disability’ is described by Mencap, the leading charity for people with learning disabilities as: ‘A learning disability is a reduced intellectual ability and difficulty with everyday activities – for example household tasks, socialising or managing money – which affects someone for their whole life.People with a learning disability tend to take longer to learn and may need support to develop new skills, understand complicated information and interact with other people.’

Mencap goes on to say that around a THIRD of people with a learning disability may also be autistic. By default that means two thirds are not.

Autism and learning disability are two very different conditions.

I am thrilled that we are progressing with genetic knowledge and diagnosing more and more genetic abnormalities and differences. With knowledge comes power. I am also delighted that we are becoming better at picking up both children and adults who are autistic. But I do hope we continue to make sure that everyone, like my son, gets a diagnosis of learning disability when necessary because without it we are denying both present and future support (it’s a life long condition), limiting educational support, and leaving children and adults feeling failures because they don’t understand why they are struggling.

Oh and let’s not only make sure we continue to diagnose learning disability when necessary but let’s make sure more parents, professionals and medical experts explain that global developmental delay is unlikely to mean ‘catch up’ and actually is just a fluffy pre-diagnosis to learning disability.

Let’s tell people the truth. There is no shame in learning disability so why hide it?

My son isn’t hiding his learning disability and neither should anyone else.

A Mother’s Cry: Can my Disabled Child Ever Become a Christian?

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It’s Easter Sunday, the very centre of my beliefs as a Christian, that my Lord and Saviour not only died for me on a cross to carry my sin, but he rose again on the third day to beat death once and for all to enable me (and everyone else who believes) to have eternal life.

I sat in church today and heard the gospel message preached with my beautiful children beside me, just the same as my parents did the generation before. I never tire of hearing the message of Jesus crucified and at 15 it impacted me personally on such a level my life has been rooted and grounded in my faith ever since.

Yet here I am faced with a massive question that has caused me to question my faith in a way I never ever expected: if he wanted to, could my disabled son ever become a Christian?

Why would I ask this? Well every tract I have ever read (there have been hundreds), every gospel message I have heard preached (there have been many) and every evangelist I have listened to have all taught a way to salvation that is fundamentally impossible for my child to ever achieve.

img_1145-1This is Isaac. He is, like everyone of us, made in the image of God. He is the most beautiful and incredible gift ever given to me. He is a true miracle having been prayed for and believed for against all odds. I was given medically less than 1% chance of ever having children yet after ten years of infertility God blessed me with not one, but two, babies. Isaac was the first born of twins. He has soft dark brown hair, hazel eyes that shine light and sparkle with life even if one of them doesn’t work and the other hides a tumour on its optic nerve. He makes noises, though at 9 and a half none of these noises form words that you and I can distinguish. He has severe autism. He has severe learning difficulties. He is epileptic. He has a brain tumour that means he will forever function as a very young child, most likely no more than aged 2 to 3 years.

So when I hear today’s gospel message once again I am crying, not only because the story of my Saviour always touches the very core of my being but because I know how the service will end and I can’t help wondering…

Can my disabled child ever be saved?

You see the way of salvation in the Bible is clear. It is based on such well known and readily quoted verses of so many believers: Romans chapter 10 and verse 9; “That if you confess with your mouth that ‘Jesus is Lord’, and believe in your heart that God raised him from the dead, you will be saved.”

I believe that.

But what if someone has such significant learning difficulties they will never understand and they can not speak their own name let alone say ‘Jesus is Lord’. What happens then?

Then there’s the famous one in John chapter 3 and verse 16: “For God so loved the world that he gave his one and only son, that whoever believes in him shall not perish but have eternal life.”

I believe that too.

But what about those who are cognitively unable to believe?

I could go on and talk about sin, baptism, the work of the cross, bridging the gap between God and man and all sorts of things that preachers and tracts talk about. Not one of these things will ever be understood by my son.

If he can’t understand the story can he ever believe in God?

He is never going to raise his hand at an alter call. He will never go forward for prayer to turn his life around, he will never hold a microphone and testify to how he was once an addict and now he is a Christian.

The fact of life is, for my son, and so many others, we need to see salvation in a different way.

Maybe I am tearing up the theology books here, maybe I am shaking traditions, but I believe my baby boy will always be saved. He will never be the lost sheep that the Shepherd longed to find. He will never be the prodigal son. He will never sin. The acts of the sinful nature (according to Galatians chapter 5 verses 19-20) are sexual immorality, impurity and debauchery, idolatry and witchcraft, hatred, discord, jealousy, fits of rage, selfish ambition, dissensions, factions, envy, drunkenness, orgies and the like…one thing I can category say is that my son will never do these.

He embodies innocence. As Psalm 139 says he is fearfully and wonderfully made. Like us all he was made in the image of God. But unlike us, he can not choose to sin, neither can he choose to believe.

He can flap as we sing praises, he can make a joyful noise, he can rest in the presence of God. He can feel peace, experience joy and love deeply. I believe he can know God in his Spirit even if his mind and body don’t function as well as we would all like.

I believe he is in the palm of Gods hand.

I believe in grace that a loving God has searched my son and knows his heart, that he is familiar with all his ways. He alone created his inmost being.

God has this covered.

Can my son ever get saved when he can’t believe and confess like every preacher and tract says he has to?

I can’t quote you scripture but my mother’s heart cries out to a God who hears my prayers and is carrying my son both now and forever.

That’s my mother’s cry.

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