To my family and I, the face in the photo above, is the sweetest, most lovely little face we know!
Question: How can this face provoke so many diverse reactions?
From the very beginning of our Autism journey, we have had to deal with people’s reactions to Jay and his Autism.
I speak of this situation, because it is one of the hardest things to learn to cope with.
When you first hear the words ” your child has autism” you have to process this and it can take months to accept it and to stop reacting to it. The first reaction is shock. Then you feel relief that you were not imagining it. Next comes grief. Yes you heard me right! There is a feeling of grief there. It may not be the same grief as losing a person you love, but it is still grief. The knowledge that your child will never be ‘normal’ and will never grow up is a huge deal. For people like us who receive the Low Functioning Diagnosis it means the child will always need caring for, which means basically your life as you know it has completely changed and will never be the same again!
These reactions are perfectly normal and it is perfectly acceptable for you to grieve the child you thought you would have and to finally gain the last emotion, which is acceptance. The time frame required for this last emotion is subjective in that it is different for everyone and completely depends on personal circumstance. Some, take it in their stride, some go in to a period of low mood whilst they feel cheated of a regular right to bring up a child to adulthood. Others feel sad and many feel anxious! It is a huge under taking and is never without questions! Questions such as, what will happen after I am gone? Where will they go to school? How will I cope with meltdowns? How will I manage my job? The list goes on!
However, at the same time Parents are going through these emotions and adjusting to life with a child with a severe Disability, there is another pressing problem on our hands. That is, how are we to deal with other people’s reactions to Autism and our child?
When Jay was very young, I already noticed people’s reactions to him. They would stare when he was screaming in his pram at four years old. They would stare because he was still in a pram at four. One lady said, as I passed by her, ” what’s he doing in a pram he is far too old and big” In the early days I had not the strength or the boldness to speak out. I just felt down every time we went out, because I could not defend us but neither could I get the stares and comments from my mind. I was not yet strong enough to cope with other people’s reactions. As Jay turned five and was diagnosed, I began to come to terms with the emotion that is grief. It came from many months of feeling isolated and alone. It came from Jay not progressing in any way and of Jay having no language. Panic set in that he may never speak. I was anxious as I watched closely for any sign of development. I also became much more educated on the subject of Autism and of Global Delay, therefore became more knowledgeable. This gave me more strength to speak out and get Jay’s needs met, both in School, and in our own life.
People’s reactions to my Jay were at times so obvious it bordered on rudeness. One day I had taken Jay to my work and was walking him up to his School on a morning. I had left his Ear Defenders at my work by mistake. As we passed by a shop, Jay began to stim. He was flapping his arms fast, and making noises. He was perfectly happy in his own way. A lady, who was opening her shop, stopped when she heard Jay, turned around to us and looked at him. She then scrunched up her nose in a direct rude way , sneered and stared!!! OOh I can tell you all, this was the turning point for me. I got brave! I had had enough- I was only human after all. I turned and stopped and looked her directly in the eyes, and said ” Would you mind not staring at my son. He has Autism.” I then gave her an icy glare and went on my way. The thing is, I still questioned myself about whether I was rude, but then I realised that I was actually responding to HER rudeness in staring and sneering at Jay. Therefore I was defending his right to walk about his home town without being ridiculed and stared at and judged. From that moment my Husband and I decided that we would always respond if someone stared at Jay or made rude remarks or sneers. We always said the exact same thing. ” please will you not stare at my child.” Simple , straight to the point and also shaming them to realise they are being offensive. It is not about being rude, or having a complex. These stares and comments are real and they hurt! They hurt Jay, who cannot defend himself and they hurt us because we love him. I believe that gives us more than enough reason to respond to these people!
We were in a café with Jay one Saturday, and Jay was making noises and stimming and he also was anxious and was close to a Meltdown. WE responded like we always do to Jay and we were helping him calm , when my Husband said quietly ” we have an audience.” I looked up and saw two people staring at Jay and pulling that same distasteful face. I ignored them and continued to support Jay and he calmed. We then got up to leave and Jay began to Stim and again flap and make noises. Once more the people looked up and stared again!! Why? Why would any one half decent do that to a person with Special needs? I just know that I would not dream of staring at and judging a family struggling with a child or grown up with Autism or any Disability. Maybe I am just a more kind person?
As we left I was so proud of Jay’s Dad who for the first time ever, turned to the couple and said “please stop staring at my son he has Autism” This had become our planned response. We were not doing this for any satisfaction of our own. We do this in order to enable Jay the right to not be stared at and ridiculed. The only way to stop bad reactions and disrespectful people, is to draw them out and pull them up, so that hopefully next time they will remember and not stare and make comments. Of course this is always done in a calm controlled manner. I will not lower myself to react angrily or in a uncontrolled manner. So, I always say it in a quiet calm voice, but the words penetrate the people’s minds and will go in!
Some people who read this , who are not Parents or family to a child with Autism, will tell me to just ignore them. Yes I could do that, but then they will continue to make people feel awful and isolated and this can lead to serious withdrawal from the world, Depression and Anxiety and loneliness. This then directly affects both parents and child. Why should people get away with making SEND Parents and children feel like that? It needs to be said, however, what I have now learned to do is to completely block them out once it has been said. Another words, I do not dwell on it anymore and question it. I simply say the agreed sentence and forget it. Why do I do that? Because, my peace of mind is worth a thousand times more than those people who are so unkind as to comment on and stare and sneer at children with Special Needs, that is why!! If you do not have a child with SEND and are reading this thinking I am making a big deal of it, I assure you this is a very real and very sad problem, experienced only by those whose child is different. I know that everyone who reads this who has a child with SEND will completely have experienced this prejudiced and probably more than once.
This post is about the way society reacts to Autism, and how we , the Parents react. For that, I have to be honest and truthful and I am being honest when I say that other people’s reactions to our children is one of the hardest crosses to bear and it never goes away! Even when your child needs medical or dental care it is a problem. I have had Doctors who completely disregard what I tell them about Jay, and try to force him to do what they want him to, and I have had Doctors who completely get it and understand. I recently have asked my child’s Paediatrician to make us a referral to a Specialist Dentist, because the fantastic Dentist Jay had, has left the Practice. If you have an emergency, and have to got to A&E, if you do not see a Doctor who understands Autism, it will be a hard stressful situation and you will find yourself having to explain what they can and cannot do and how they talk to them too. Some Professionals just cannot be bothered with Autism and just want to get the job done and they do not care how they do it. The same can be said for Teachers. You get the Teachers who are wonderful and completely make every effort to understand Autism and the child’s needs, and then you get teachers who do not care a jot about it and to them your child is a menace and a trouble maker and they refuse to help. We all have experienced prejudices from the world around us, everywhere we go, and in everything we do. Prejudice towards Disabled people is a serious problem now, yet training ourselves to not let the feeling in is where we find our strength!
“No one can make you feel inferior without your consent” This is a famous Quotation from a very wise woman and it is so true.
If we allow these people to get to us, they are winning, and in all account this amounts to bullying. That is something I will not tolerate towards my child so I will defend his right to a peaceful existence where he can be himself and not be ridiculed for this. That is a fight worth fighting!
Reacting to Autism! Let’s all have strength to strive for a world where difference is celebrated and embraced instead of censured and isolated. That is a world to be proud of.
Jay and I – I am his voice and his light and he is my strength and my light!
Next Time: Autism and the Natural World