Three things that happen when your autistic child is different at home and at school

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I am going through a very difficult time with my son. This morning he was carried to his taxi by my husband and myself kicking and screaming. He was stressed, his sister terrified and I was anxious and worried.
I haven’t called the school and asked if he is ok because I know what they will say.
He is not like that in school

Reports from school don’t marry with the child at home at all. In school he conforms, is settled and appears happy. At home he can be violent, unpredictable and highly distressed. This creates some problems for school, home and professionals. The great divide between home and school is a huge challenge and I am not alone in struggling with this.

When my autistic child is different in school it makes parents feel they are to blame.

When the common denominator for the challenging behaviour and meltdowns is home it is all too easy for professionals and schools to jump to the conclusion that bad parenting is to blame. We are accused of lack of discipline, lack of stability, lack of structure, feeding our children the wrong food and even not loving them enough! Just because a child has the ability to ‘hold it together’ in a very controlled environment all day and releases the lid on their frustrations, stressed and anxieties at home does not mean home life is awful. In fact the opposite is true! If a child did not feel secure, loved and safe they would continue to ‘hold it together’ at home for fear of releasing their true feelings.
Instead of blaming parents, schools and professionals should be more understanding of the difference between home and school and more willing to listen when their ‘perfect’ child is presenting totally different outside the school gates.

When my autistic child is different in school it makes accessing support very challenging.

So many parents know their child needs support from CAMHS or social work or speech and language but continually get denied these services due to presentation within a school setting. It is frustrating and damaging for so many children who put on a front within the classroom but who inside are screaming out for help. The system is loaded too much to the side of education where if referrals are put in from schools these are readily accepted yet a parent refers to the same service and the referral is often refused. There is still a huge assumption in the system that if a child truly had problems these would manifest in all settings the same. So parents get left to pick up the pieces of broken children by themselves with little support and hundreds of vulnerable children fall through the system because they are ‘good’ in school.
Perhaps if schools spoke to children or were more aware of stresses within the classroom environment for children with autism like noise, lights and the stress of conforming all day they may be more willing to support referrals for children who seem like Jekyll and Hyde.

When my autistic child is different in school it appears I am lying.

I have been at the meeting when all eyes are on me and I know they think I am lying, or at best exaggerating. I should never have to do it but I have resorted to videos and photographs of my child at times to prove that what I say actually happened. Would staff at school have to do this if the opposite was true and he was angelic at home but violent in school? Everyone at the meeting would be jumping in to support the teacher or school support staff if they were scratched or bitten or pushed by my son but as his mother it is seen as outrageous that I accept this behaviour at home. When I mention strategies we have put in place to help support my child at home and how these are not working some days they once again assume I am lying. It makes parents feel so alone, so belittled and unworthy. We already feel like a failure and those feeling are just made worse when schools give more and more examples of wonderful behaviour at school in answer to every incident at home that is mentioned. He punched his sister at home but shared his pencils with another child in school the same afternoon! He had a complete meltdown over homework yet got full marks in his spelling test the same day! It can be the same child and the sooner professionals and schools understand this the better for everyone. Have they never been professional and polite to someone in their job only to go home and let off steam by moaning at their husband or shouting at a driver who cuts them up?

I know what it is like to see my child happy, flappy and a delight to be with. I also know how hard it is for him and myself to see him so distressed he can not control what he is doing. Like thousands of other autism parents I experience the great divide, the Jekyll and Hyde of autism, on a daily basis.

Put me into different environments like an interview, a prison, a party or a holiday and you will see me change to suit my environment. My child with autism is no different.

I need people to see this and understand.

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When someone says, “It’s only autism”

imageTwice now I have heard the paediatrician confirm ‘Your child has autism’.

Have you any idea what that feels like?

Hundreds of times I have found myself telling someone else that one or both my children have autism.

The responses are interesting. They range from shock to sympathy, from confusion to comfort, from understanding to utter ignorance.

A few times people have told me it isn’t that bad, it is ‘only autism’.

Before I go any further I need to tell you I am so grateful for my children. I adore them. My son attends a school for children with severe and complex needs and he mixes every day with children who have life limiting and severe medical and developmental needs. I am involved with a charity that supports children with Neurofibromatosis and know personally of children with brain tumours, undergoing intensive chemotherapy and struggling with pain. Every time I take my children for hospital appointments I count myself blessed. I know there are thousands, even millions of families in the world worse off than mine.

The biggest issue my children both face is autism. But it isn’t ‘only autism’.

When you say ‘it’s only autism’ it can sound like it is something minor, insignificant, that it has little to no effect on them. That could not be further from the truth. According to the National Autistic Society autism is ‘a life long developmental disability…’ In other words my children with autism will one day be adults with autism. They will always have it. When you say ‘only’ I think of a cold or a sickness bug that is minor, time limited and will leave no major problems. My children’s autism is none of those.

Autism affects how they speak. One of my children has no speech at all aged 7. He may or may not be able to speak as an adult. What is ‘only’ about that? I find that very significant and life limiting for him and us. Many children and adults with autism have echolalia, selective mutism or difficulties being understood. These are all significant speech and language issues that need intensive support.

Autism affects what they wear. They both have huge sensory issues and rigidness. My daughter refuses to remove her school fleece even on the warmest of days and my son went two years only wearing his school jumper every single day. Some children with autism strip off even in public, others are unable to wear shoes and many have issues with everyday items like socks. It may seem trivial in comparison with what others struggle with but dealing with this daily is exhausting and debilitating for so many.

Autism affects what they eat. I have one child with autism who has no concept of edible and non edible at aged 7. He would eat plastic as easily as mashed potato! I have another who refuses food due to severe anxiety. Millions of children with autism have limited diets or severe eating issues. The stress parents face at every mealtime is anything but ‘only’.

Autism affects their play and social skills. My son is locked in his own world. He has little awareness of other children and with no language he is unable to really interact with others. My daughter has no natural desire to talk to other children other than one friend and last year preferred talking to flowers to talking to children. She likes rules and sadly people and social events don’t always comply with rules and she gets confused. My children are vulnerable and always will be. That is scary.

Autism affects how they learn. My son has significant learning disabilities. This is not uncommon with autism. My daughter learns best from visual stimulation which is not always how things are taught in mainstream school. They need patience, understanding, repetition and consistency. So many things take longer. They won’t ‘grow out it’, ‘be fine’ or ‘snap out it’. My son won’t suddenly learn to read or write or talk. It takes time and intervention and therapy. None of that is ‘only’.

I could go on and say how it affects the way they understand and think. It affects how they interpret emotions. It affects their sleep and self esteem. It affects their mental health. It affects their ability to face new situations and cope with change.

And it affects me as their mum.

Yes there is so many things worse than autism. I would never ever argue with that. But autism is still a serious condition for so many, my children included.

It may be ‘only autism’ to you, but it is far more to me, my children and thousands of others too.