Autism Isn’t A Lifestyle Choice

Autism diagnosis continues to increase year on year. With that comes more awareness and hopefully more acceptance. More and more adults are now seeking diagnosis and some even ‘self identify’ as autistic. Not a day goes by when there isn’t a press article, a blog, a meme or a TV programme featuring or talking about autism. So has autism become a trend, a cool thing to be, even a lifestyle choice, and is this right?

Autism isn’t something that should ever be taken lightly. For many, my son and daughter included, it’s a significant disability requiring life long support. They made no choice is being autistic and they can’t choose to stop having it either. It’s part of them p, and always will be.

Recently I was having a discussion with someone and I was asked if I said my children were autistic before they had their official diagnosis. Of course they WERE autistic before they had their official diagnosis, they were born autistic after all, but prior to official diagnosis I said that my children were ‘under investigation for autism’ or ‘waiting to be tested for autism’ and later on, having sought advice from their paediatrician, I was told they had a ‘working diagnosis of autism’ meaning everyone was treating them as if they had an official diagnosis as we waited to reach the top of the waiting list so they could access services immediately based on need. I never once said they ‘were autistic’ as a formal diagnosis until it was confirmed.

Things were similar with my husband. He suspected he was autistic, as did every professional working with us, but as nothing was confirmed we didn’t say to anyone. That wasn’t because he wasn’t autistic it was because, until confirmed, it was based on suspicion, our own research and the thoughts of others who were unqualified to formally diagnose. Until formal diagnosis my husband didn’t tell anyone he was autistic or even suspected he was autistic, other than me. After diagnosis he was happy to share the news both privately and publicly.

Yet everyday on social media, in comments on this blog and in groups, I see self diagnosed adults with no formal diagnosis of autism confessing to know more about autism and my children because they ‘are autistic’ or ‘choose to identify as autistic’. It’s become ‘normal’ to be allowed to say you are autistic even without any formal diagnosis.

Autism isn’t like being vegetarian or vegan, it’s not a religion you choose or a trendy way of living or identifying. You can’t be autistic one day but not the next when it suits you. You can’t be at little bit autistic’ either and you absolutely can’t pick and choose autistic traits like it’s a pick and mix in a sweet shop!

Doing a Facebook quiz and getting a certain score does not mean you are autistic. It means it might be worth investigating further; nothing more.

Now let me clarify that I am well aware that the more information about autism there is the more likely many adults will discover they are actually on the spectrum. This is exactly what happened to my husband but the words of the doctor we went to at the time have so much wisdom in them:

Autism is something for the experts to decide, not individuals, because like any condition it needs thoroughly tested. For everyone’s sake it’s better to know for sure than assuming anything.’

Autism for all three of my family is a disability. In no other disability would it be acceptable to just say you have a condition without actually having proof. You may be diabetic or have Scoliosis or have arthritis but until a doctor or expert confirms this it is dangerous to take medication for those conditions and say you have them if you don’t. There is a valid reason why many services need an official diagnosis before you can access them.

Now I know formal diagnosis for autism isn’t perfect. I know there are a few people misdiagnosed by the experts and I appreciate waiting lists are long. I also appreciate that access to formal diagnosis isn’t always even available.

However, if you have truly and thoroughly researched autism and believe you are autistic then by all means share your thoughts privately with your family or close friends. By all means look for support and answers. Just don’t hail yourself as an expert on a condition that you haven’t formally been diagnosed with yet.

My issue isn’t with genuine people who are autistic but can’t access formal diagnosis for financial or other reasons. My issue isn’t with children being let down by the system and left to struggle. I do understand the heartbreak of knowing your child or loved one needs support but being unable to access that. These all need addressed.

My issue is people that see autism as a ‘lifestyle choice’, a way of identifying because it fits with their own thoughts even if qualified professionals don’t agree and then using their self appointed status to publicly assert themselves as an expert on those formally diagnosed like my children.

My issue is people who say they are autistic yet in the next breathe say ‘but I probably wouldn’t get diagnosed’.

You can’t just decide yourself you are autistic. Your own opinion of yourself isn’t of more importance than trained professionals. It takes more than one person to agree on a diagnosis of autism for a reason.

Autism isn’t a lifestyle choice, it’s a complex lifelong condition that affects people forever.

Don’t make my children’s disability into a trendy way of life. Don’t say you have a disability publicly until you know for sure. I want to understand more about my children’s condition but I don’t need self confessed ‘know it all’s’ who aren’t even diagnosed themselves telling me how to support my children.

Autism and Anxiety – An Awful Combination

Another school morning and another anxiety filled hour for my autistic daughter. Her life is filled with rituals, fears, worries and restrictions and nothing is getting easier. She has autism with generalised anxiety and the combination is awful.

It all starts with how she wakes. (Well actually it starts even before then because she often has nightmares.) She immediately has to check that everything is how she left it before she fell asleep. She has to have certain comforts in bed and they are all lined up just so. If anything has moved while she slept her anxiety becomes extreme.

“Mum, someone came into my room again last night!”

“Mum, I can find ….I need you NOW!”

Things must never change. Nothing can ever be moved. That’s her rigidity due to autism but then the anxiety kicks in when something changes and her whole world spins out of control before she’s even out of bed.

Anxiety, autism and sensory issues then affect what she will eat (usually the batter from chicken nuggets for breakfast because she has AFID (avoidance restrictive food intake disorder) and will only touch a select few foods.) Clothes have the same problem and I am down to just three pairs of school trousers she will accept and two polo shirts. I have no idea what I would do if my washing machine ever broke! Socks cause huge anxiety but going without them causes even greater anxiety again. She can’t cope with school shoes so she has trainers.

Then she has her rituals every morning. Set things must be fully completed before she can leave even when time is short. Cries of ‘mum have I got time for…’ can’t actually be answered with a no or she collapses in a heap unable to function. Her mind has so many open boxes that must be closed before she can step out the door. Leaving any open means her day will be preoccupied by one unclosed box and she can’t move on. She can’t ‘just ignore it’ or ‘forget it for now’ or ‘do that later’ because autism and anxiety don’t allow for that.

She has to please everyone. Homework must be done to the letter. Missing a night isn’t an option because anxiety tells her her teacher will somehow know and reprimand her. Her own conscience condemn her because she has to be perfect.

Even before she gets into school she must be first or second in her line because otherwise in her mind she is late. Anxiety makes her thoughts irrational but autism prevents her seeing it that way. Autism then distorts how she perceives the world and those around her then anxiety tells her she’s useless, foreign and not wanted. It becomes a vicious circle controlling everything.

She can’t break rules for fear of being shouted at. Fire drills sent her anxiety spinning because she has to go outside in indoor shoes and without a coat, two rules that she can’t break due to her anxiety and autism. Being outside at the ‘wrong time’ sends her stomach in knots for weeks afterwards. No amount of social stories or reassures help.

Every day is exhausting. Anxiety exhausts her as she lives on her nerves never feels adequate or good enough or perfect enough. Then autism tells her this will never change and that everyone looking at her is doing so because she’s done something wrong.

Autism affects her ability to communicate then anxiety prevents her overcoming this.

Autism affects how she understands social situations then anxiety makes her feel the world is better without her.

Autism means she must obey the rules then anxiety makes her fear for the consequences of being unable to do so through no fault of her own.

Autism makes her vulnerable then anxiety means there’s nothing I can do to change that.

Autism Is a lifelong communication disorder affecting how she communicates, thinks, understands language and interacts with others.

Anxiety is worrying, unease and fear about the unknown.

Together they are crucifying my daughter and so many others.

There is no cure but that doesn’t mean I give up trying to help her.

My daughter is beautiful, kind, caring, compassionate and smart. If only the awful combination of autism and anxiety left her alone others could see her potential and love even more.

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?