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.
As I fill in forms and prepare for my son’s first transition hour at his new high school I find myself being thankful that he has very complex and profound needs. Why? Well because this meant he easily secured a place in a local ‘Additional Support Needs’ high school (known to most as a special needs secondary school).
Next year will be different. His sister has no learning disability or difficulties, but she is autistic and won’t cope in mainstream high school. Having looked at different options it lead me to draw this simple drawing:
Where do children like my daughter go?
Far too often there just isn’t a school that’s right for your child.
This is the story of a child called Miss S written by her mother. This is the story of a child, who due to her autism, no longer fitted into the mould of mainstream school and despite having no learning difficulties she did manage to secure a place (eventually) in a special needs school but this didn’t work either.
Many will say ‘just home school’ but for many children this isn’t the best option. They want to go to school but there just isn’t a school that’s right for them. ———-
“Well, you’ve missed out on a pretty and symbolic sunset” Miss S texted me earlier.
I was out, picking up some fries. For her, to cheer her up. Yes, I’m aware this could be classed as comfort eating, we’ve discussed it… that’s not what this post is about today.
I asked Miss S why the sunset was symbolic. Her reply, via text, was:
“So, the sunset was pretty orange, and while the sun was still visible (from my room), it shone an orange light. When I wasn’t looking at it, it felt kinda like symbolism in the sense that the light at the end of my very dark tunnel was behind me and I couldn’t see it, and when I did see it, it was already gone.”
I asked if I could share her words here, she replied:
“Sure, so long as you say AND THAT IS DEPRESSION FOR YOU, KIDS!”
It’s been a tough day, emotionally. Lots of them are, of late. And today’s upset was despite making it outside for a walk with Miss S, something she’s not done for a very long time now. I should have been over the moon. But the reason we went out was tough….
Last week, an advert popped up on Miss S’s iPad. It was for the local private girls’ school, a picture depicting five girls linking arms and laughing, in their uniform. Miss S sent it to me and said she wanted to talk about it; she had searched it up on the map, seen it was fairly close to our house and so decided she wanted to try it there.
Knowing that the private, academic school would not be suitable for our girl, I tried to steer her thoughts away from it. On the map we saw an even closer school to our house, ten minutes walk away (discounting the closest her sister attends, which takes only a minute to walk to) and so Miss S switched her attention to that. I didn’t want to crush her hopes so I promised her I would speak to the school. Knowing full well that it was highly unlikely they would be interested in being as flexible as they would need to be, I called anyway, but I couldn’t get past the gatekeeper receptionist who told me I should put it all in writing.
Today we took a walk to this mainstream secondary, so that Miss S could get a feeling for where it was and what it looked like. On the way there she was asking me lots of questions, about the uniform, about whether phones were allowed in school, about what subjects she would have to learn. She talked about how she would like to walk to school herself and would listen to her music en route to keep herself calm. She chatted about how she wanted to walk unless it was cold or raining. She spoke at length about lunchtimes, wondering what food would be served and whether she’d get her beloved potatoes which were pretty much the only things she’d only eaten for lunch at her previous two schools. She talked about how the school would be full of ‘normal’ children and so she might stand out for being weird.
We came home, and she asked to buy a new game for the computer – called School Simulator. She acknowledged with a wry smile that it showed how desperate she was, to want to pay £15 to be able to create her own school. Sadly, the game proved too difficult for her to understand, and it just magnified all the feelings of failure which she has. She took herself upstairs to bed, put her face mask on and her soothing piano music on the iPad, and said she wanted to sleep forever until there was any news about a school for her. She then slept for 2 hours in the middle of the day, when she wasn’t even particularly tired. Just upset, emotional, and ‘bored’ of life because she can’t see the point. As she said to me on our walk, she just needs to know something about the future, to have a plan. It’s not a lot to ask, is it?
Of course there’s no point in me putting anything in writing to that mainstream school we walked to today, despite having reams of ‘evidence’ of needs in my SEND parent files. My ideas of what could help are outside of the box, off the wall, not in keeping with the school system. Our girl would be seen as a burden, an issue, unwanted extra work. Mentally, and financially in terms of support and paperwork. Because it all comes down to the cost, and the budgets at the end of the day.
But our girl wants to be at school. She wants to be part of a community. To feel wanted, to have friends. So much so, that she is prepared to try anything (apart from wearing trousers as part of a school uniform apparently). But that doesn’t mean she would be capable of bending to the system, of becoming that round peg needed to fit in the round hole. And instead of being supported to find an alternative for her, I am left to be the one to break her heart.
It shouldn’t be this difficult, should it? All it would take is a handful of individuals who really care, to come up with some activities and solutions. A chance for Sasha to join in with small group work, music or swimming lessons, anything, to keep her going and think that there is a point in life. She wouldn’t be able to access busy corridors or playgrounds, or the lunch canteen without extra support, but surely the fact that she wants to try should be acknowledged and encouraged?
She is being let down, massively. I’m trying to keep her afloat. Who knows where this will end?
Miss S is being badly let down by an education system that only seems to allow those with learning disabilities, like my son, to receive specialist provision when so many others, especially those with autism, really need a viable alternative to mainstream too. I’m terrified my own daughter is going to be one of those children who are too clever for special needs school but too autistic to fit in mainstream. Where do children like her and Miss S go?
What do you do when neither mainstream nor special needs school are right for your child?
We need wider provision in the education system so there are no more children, like Miss S, left at home desperate to go to school but with no suitable school to go to.
With special thanks to Steph Curtis from Steph’s Two Girls who writes a wonderful blog about autism and pathological demand avoidance. I would encourage you to read her blog and check out her Facebook page too.
Most 11 year old girls find their brothers annoying. My 11 year old daughter actually wants to marry her brother! Why?
Well at just eleven years old my daughter already knows her brother will need life long care. While other children her age are out playing with friends, having time out on video games or at after school activities she’s bathing her brother, making sure he is dried, helping dress him and reminding me to get his medication.
She’s never known anything else despite her brother being stronger, taller and at a different school to her.
She knows he can’t speak but knows exactly how to communicate with him. She plays with him, reads to him and soothes him when he cries. It’s beautiful but also heartbreaking; innocent but also concerning.
At eleven she knows already how vulnerable he is. She knows he will live at home and never be independent. She knows the chances of him learning self care skills like toileting, dressing, cooking and washing himself might never happen. She knows he will need full time care all his life.
She knows he won’t marry and she wants to marry him to make that happen.
As she used a flannel to gently bathe him I overhead the following: ‘One day I will marry you. Would you like that? (She waited for him to smile back and sign yes). That way you will be ok.’
I haven’t asked her to do any of this. She actually has more than enough of her own struggles to be contending with (autism, anxiety and eating issues to name a few) but her empathy and close bond with her brother is so natural and heartfelt.
Yet when I asked if she could access help as a young carer I was told she didn’t meet the strict criteria: she apparently wasn’t caring for him enough! Other than school and just three hours a week when she has a carer take her to activities (because I can’t take her anywhere due to having to care for her brother) she doesn’t ever get a break. Summer means seven weeks 24/7 with her brother as he gets zero respite in summer too.
She has witnessed seizures that have frightened her, surgery that has terrified her, meltdowns that have saddened her and self harming that has broken her heart…yet she was rejected from mental health services several times.
Of course she can’t marry her brother and neither should she even want to. She should have ambition, friends, a care free childhood and growing independence, but instead she worries if her brother will be ok when he gets older.
Why would an 11 year old want to marry her brother? Because she loves him so much that she’s terrified who will care for him when he’s an adult.
That’s not something any child should worry about but when she already sees how little support he gets now is it any wonder she worries for his future?
The fact any 11 year old girl is asking to marry her complex needs brother in order to know that he will be cared for should be a wake up call to us all. Her brother deserves better and she does too.
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.
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.
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?
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.
According to my Facebook memories it is exactly six years today since my daughter was diagnosed. She was 4 at the time and had been going through the process of diagnosis for over a year by the time her appointment came.
I recently heard a parent of a child suspected of being on the spectrum say they would never look to get their child diagnosed as they didn’t wish them to ‘be labelled.’
So how has having my daughter diagnosed helped?
Firstly it helped HER.
This is by far the most important point. My daughter is able to accept herself, understand herself and find her ‘tribe’ by having an identity and knowing that while she may be different she is far from alone. Her mental health was one of the biggest reasons I sought for a diagnosis. There is no shame is being autistic and I seek to promote her autism as part of her wonderful, unique and beautiful personality. It is who she is and she embraces that.
Secondly it helped HER EDUCATION.
By having a diagnosis her anxiety is recognised and supported. Her selective mutism is understood and not ignored. When she takes language as literal teachers can see she isn’t being cheeky or naughty but it is a genuine processing difference. Her social differences are understood and can be supported. Her strengths can be celebrated and her struggles supported. Sadly without a diagnosis some services could not be accessed and therefore support could not be put in place. Having a diagnosis brought patience, understanding and help that she would otherwise have missed out on.
Finally it helped ME.
I am still the same parent I was before but now my mental health has improved making me a stronger and happier person. We are too quick to forget how much parental mental health can affect families. When parents feel they are to blame for their child’s difficulties, anxieties and struggles they become defensive, depressed and isolated. Unfortunately parent blame is rife without a diagnosis as it is assumed the child is struggling through poor parenting. This is very rarely the case but it has destroyed so many families when diagnosis is delayed or withheld. I am more able to embrace my child, celebrate her and enable her because I understand her better and no longer carry the burden of guilt that I am to blame.
Naomi’s diagnosis report is very different to the child she is five years later. Her autism now manifests in very different ways but she is still autistic and both of us celebrate that fact daily.
Autism hasn’t stopped her succeeding, in fact in many ways it has helped her. She’s a rule-abider, people pleaser, unique and funny individual who accepts her own quirks and is happy being herself. She has struggled and even added ‘extra’ diagnosis over the years including an eating disorder but in the six years since her autism diagnosis she has won several awards, been on prime time TV, fought and won for a disabled swing in the local park for her brother and even written some incredible blogs about her own struggles.
Would I still want her diagnosis today if she wasn’t already? Absolutely!
Diagnosis isn’t anything to fear, it’s a key that helps you understand and access support. It doesn’t define your child it just enables them to be free to be exactly who they are.
If you are worried about your child’s development do seek advice from your GP, health visitor or child development team. It is in everyone’s interest to support and diagnose where necessary.
I thought I knew a fair amount about how children learnt to talk. I knew they watched their caregivers, mimicked sounds and eventually words, and over time those build up to two word sentences, then perhaps phrases, and finally fluent speech. I knew some children spoke a little later than others and some were a little harder to understand but until I had children of my own it never really occurred to me that some children never learn to speak at all.
My son is almost 11 and he still can’t speak. I never knew that was even possible but in the long journey I have been on since he came into my life his lack of speech has actually taught me so much about children’s speech in general. All my assumptions and generalisations were in fact ignorance based on nothing more than limited experience and lack of knowledge.
It’s amazing how having a child who struggles with something others manage seamlessly can make you learn!
So what has my non verbal child taught me about children’s speech?
Through him I have learnt that:
1. Speech is actually not the most important thing after all: communication is!
I was so caught up with panic at the fact my toddler didn’t say any words that I hadn’t noticed how he was communicating! His eyes, his body language, his facial expressions, his noises all communicated in ways that words couldn’t. He had, and still has, ‘happy noises’, ‘agitated noises’, ‘tired noises’ and ‘excited noises’ and by understanding and responding to them we can communicate really well despite a complete lack of spoken language on his part.
We (notice I had to do it too to teach him not just him) have experimented with using objects to communicate, photographs, picture cards, drawings, pointing, and sign language. He didn’t immediately latch on to any particular one but he can sign ‘yes’ and ‘thank you’, he does point now and again and in the end he developed his own very unique means of communication using google street map. What he lacks in spoken language he more than makes up for in ingenious ways of getting his point across in other ways.
2. Lack of speech doesn’t mean lack of understanding.
Receptive language and expressive language are two very different things but until I had a child who can choose his own dinner, follow a simple instruction and get his shoes when I mention I am going to the shops, but who couldn’t actually speak to me I had no idea this was normal. My son isn’t deaf. He hears everything said which unfortunately isn’t always a good thing because when I say to anyone he can’t speak most people then seem to talk to me and completely ignore my son. Even worse are comments like ‘that’s a shame’, and ‘I’m so sorry’ like my son has some awful infliction when he just happens to be non verbal.
My son does have learning difficulties but even taking that into consideration his ability to understand is years above his ability to talk back. The lack of spoken language doesn’t always mean learning difficulties though and given other ways to communicate many non talkers have shown they can gain degrees and pass their driving test and achieve in ways many thought impossible.
3. Having a child who struggles with any aspect of speech is not the fault of the parent.
Did you know that the first thing that happens when you finally get a referral accepted by speech and language therapists is that they send you on a parenting course? The message very much seems to be (wether intentional or not) is that the parent is somehow at fault. My child isn’t non verbal because I am an awful parent. Contrary to what many think my son has books read to him daily, I talk to him all time, I sing nursery rhymes,, he has experienced language enriched environments from birth and he couldn’t be loved more. He just doesn’t talk.
I’ve been through the guilt questioning what I did wrong. I’ve felt the judgement of others and often still do. I know that pitied look when a stranger talks to my child and I explain he can’t speak.
When your child doesn’t master skills other children do there is a feeing of isolation, failure and despair that you are in fact the world’s worst parent. That is, in fact, so untrue. If anything the opposite can often be more accurate as parents over compensate for their child’s struggle by taking time to attend courses, do research, and buy all sorts of resources to give their child the best chance to succeed. My experience of families with a child who struggles in any way with speech is that they move heaven and earth to support their child and go above and beyond. Having a non verbal child is very very rarely due to neglect.
My son is amazing. He is funny, clever, excitable, affectionate and fun. He just happens to be unable to speak.
His inability to form spoken words has actually taught me more about speech than I ever thought possible.
You don’t always need words to communicate anyway.
My husband is autistic. Both my children are autistic. I am a huge advocate of autism awareness and acceptance. However I am also a realist and deeply honest and something that has been worrying me more and more is the fact that we seem to be moving perhaps too far in our pursuit of autism acceptance and I am now wondering if the scales are now tipping too far the other way?
What do I mean?
Well for many years the voices of autistic adults were ignored and suppressed. In more recent years, thankfully, this has been changing and some of the most successful advocates for autism are now autistic adult self advocates. This IS a good thing and I don’t want us to stop hearing from autistic adults. I have learnt so much from them and I would love my own daughter to emulate some of them as she matures and grows.
However, there is a balance and with the growth of self advocates there has been a real suppressing and abuse of parents of autistic children (and adults) who have been threatened and bullied because their thoughts seem to clash with the autistic self advocates.
You see autism is a very different experience for different people. For some adults it is just seen as a different way of thinking or a unique way of looking at the world and for them that is absolutely fine and right. Then there are parents, like myself, of children who may never talk themselves and who have extremely high care needs and require round the clock care, diagnosed with the same condition, yet living very different lives. For those families, and I say families because it affects everyone not just the autistic child or adult in these cases, autism is a huge disability and they have a right to voice that too.
Here is a good example of how things have changed:
Six years ago when my son was just four, screaming all day, smearing, non verbal, still in nappies and attacking me I would read posts on support groups which read ‘Help My child is always in meltdown, attacking me and stimming. I’m exhausted and struggling.’ I could identify and I would say so. So many others said similar and the person posting was validated in their struggles while a few would give some ideas of things that had worked for them. Everyone wanted to help both the child and the parent but at no point was the parent made to feel awful for struggling.
Fast forward six years later and the same post in the same group gets very different comments because things have changed. We have been told by autistic adults how much they need to stim and how we need to accept them for exactly who they are and embrace their differences. While that is absolutely right it has also lead to parent bashing and now the same parent gets comments such as ‘how dare you make this about YOU!’ They are called a martyr mum for struggling and some even go as far as to threaten to report them for abuse claiming the child is struggling because they are such an abusive parent. What then happens is the parent feels worse than ever, even less equipped to support their child and even more isolated than before.
Then there is the cases of genuinely concerned parents desperate to help their struggling children asking about therapies in order to help their child make friends, communicate better or cope better in school and they are jumped on by autistic adults who were damaged by certain therapies as a child and who say the parent isn’t accepting or loving their child as they are because they want to change them.
We are fast reaching a point where parents are no longer allowed to be human, or ask for support or want to help their autistic child. We are no longer allowed to mention anything that even hints that our child struggles or that they have any difficulties or we are accused of ableism.
Apparently I am not politically correct and ableist by saying my son has severe autism, he is non verbal at ten, not toilet trained and has the academic ability of a baby. However that IS exactly what he has. He has low functioning autism and his reports even state ‘severe mental impairment’. Stating that he won’t get married, have children, live independently and need 24 hour support all his life is suddenly taboo and offensive because his autism is just a different way of looking at the world and nothing more. According to some self advocates I should have my son removed from my care because I dare to say his autism is a disability. Apparently none of his difficulties are actually his autism and all other conditions. They say my attitude is what disables him and not his autism.
We need the voices of autistic adults, as parents we need to know what to avoid and how best to support our children BUT we need to also be allowed to struggle too. The seesaw of acceptance has to swing both ways.
For a long time parent voices out weighted those of autistic self advocates and that was wrong. Now I feel we are in danger of swinging the opposite way and parents who are sleep deprived, heartbroken at watching their child self harming or struggling with suicidal thoughts, or just exhausted by the same ten seconds of a video on replay for 8 hours, are vilified for daring to say autism can be difficult.
Can we take autism acceptance too far?
If we continue to see it just as a different way of thinking or seeing the world we are in danger of losing educational support for so many struggling children and throwing them into mainstream because ‘autism is not a disability’.
We are in danger of losing vital financial help for families because they are too afraid or programmed not to admit their child’s struggles.
We isolate struggling parents leading to an even bigger chance of vulnerable children being abused and parental suicide.
We cut back vital adult services for those who need it because we see anyone with autism as just different and not therefore in need of support.
We need a balance and an acknowledgement that autism is experienced differently by different people and that’s ok. Some need very little support while others need much more and that includes parents as well as autistic children and adults.
Until we accept that the balance of autism acceptance will never be right.
A week before my daughter had her fifth birthday I took her for an appointment at a local clinic. She can’t remember anything about that day at all but we left with life long diagnosis and a relief of knowing why my daughter was different. That was the day she was diagnosed autistic.
I don’t believe in hiding things from children. Children are way more resilient than we often give them credit for and they deserve to know about their own diagnosis if it is appropriate for them. I didn’t want my daughter growing up thinking she was ‘weird’ or ‘different’ as her dad grew up with those same feelings and it has really affected his mental health as an adult. Unfortunately he wasn’t diagnosed autistic until he was 59 and the not knowing and therefore not having access to support has affected him negatively for many years.
I wanted my daughter to grow up proud of who she is, autism and all.
I have never once sat down with either of my children and told them they are autistic. I have never talked about the ‘triad of impairments’, or sensory difficulties or how being autistic makes her vulnerable and different to others. Her understanding of autism has organically developed over time by living with a twin brother who is non verbal with learning difficulties and who is also autistic, experiencing her own autism daily and seeing how her dad experiences life differently to me as an autistic adult. Anytime she has had questions or concerns I have explained things openly and as simply as possible.
She has also watched me advocate for her, her brother and her dad. Meanwhile, in her mainstream class she has seen another five children receive the same diagnosis as her despite being very different. She has been exposed naturally to a wide spectrum of autistic people and non autistic people and this has allowed her to form her own opinions of what autism is.
So when I told her I was planning to make some autism pictures for autism awareness month she freely asked if she could do them instead. I listened to her ideas and instantly loved them and so thought April 2019 she set about to embark on a project that has opened my eyes to just how much she understands about autism and given me great insight into how she sees the world.
If you asked Naomi ‘what is autism?’ she would be unable to answer you. If you asked her ‘what is autism like for you?’ she would also struggle. But allow her to show you and her insight and awareness is truly remarkable. Without even knowing it she touched on all the main ‘features’ of autism from communication:
To literal thinking:
To the need for routine:
To sensory issues:
To sleep struggles:
From liking rules:
To needing to be alone:
From struggling with things (or being brilliant at them):
To feeling overwhelmed:
From struggling with choice:
To liking repetition:
From needing comforts:
To finding words hurtful:
From the need to finish things before moving on:
To finding bathrooms scary:
She even covered the seasonal issue of Easter since it landed right in the middle of awareness month:
Her pics were simple, effective and, other than her hashtag, had no other mention of autism. All she wanted to show was summed up nicely in her first ever pic:
So when I told her that hundreds of people were following her pictures and asking if they could keep them she chose to end with a little humour….
She found it quite amusing that the majority of people who wanted to ‘collect’ her pictures were in fact more like her than they perhaps realised.
At just ten she’s proud to be exactly who she is but she wants others to know and understand that while someone may be autistic you may be far more able to relate to them than you might think.
‘We might all be different but in so many ways we are just the same.’