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 okay, 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 on struggling with this.
1. When my autistic child is different in school, it makes parents feel they are to blame.
When the common denominator for the challenging behavior 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.
2. 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.
3. 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 behavior at home. When I mention strategies we have 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 feelings are just made worse when schools give more and more examples of wonderful behavior 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?
Our children are complex and confused, and yet they soon learn where they can explode and where they can’t. Sometimes their triggers are only home-related, and this must be accepted. Struggling parents are not lying just because you have never seen the child react like that in the environment you see them in.
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.
