I know that you are reeling from what you have just heard and so I am going to write you the letter that I wish someone had written me, when I heard the same news.Nothing can prepare you for the shock of finding out that your child is on the autistic spectrum. When my husband and I heard the news, my brain froze and now, thinking back, I seem to see what happened in the doctor's room as if I were looking down the wrong end of a pair of binoculars. We were not expecting it - our two and a half year old son was nonverbal and we did not know that it could be a warning sign. We thought he might have glue ear. I’d been cheerfully answering questions for about 10 minutes when suddenly the paediatrician said ‘How much do you know about autism?’. I just stared at her. Then I looked at my boy who was becoming more and more wound up. He was being spied on and felt it. ‘Enough, I said, to know that I do not want you to tell me that he has it.’ We were scratching around trying to come up with questions but there didn’t seem to be any answers available. ‘ Where is he on the spectrum?’, ‘What will it mean to his life?’, ‘ Will he ever be able to speak?’. Only time would tell, apparently. It wasn’t good enough. What we needed was for someone to be able to look into the future and tell us that no matter what he had, no matter what it meant, he was going to be ok.Professionals always say that you go through a grieving process when your child is diagnosed. That you grieve for the child that you thought you had. Rubbish. I wasn’t grieving, what I felt was pure terror, a horror that I could not get away from, as if something were clutching at my boy and there was nothing I could do to protect him. I wanted to grab him and run from the room, the building, the world. I remember telling the nurse to give me something to read - ‘don’t send me home with nothing to read, I need to do something. Somebody needs to tell me what to do’.What I want you to know is that there is plenty that you can do. Firstly, love your child with all your heart and soul and resolve to understand the way that they interpret the world. You have got to get in there with them. Secondly, give them your undying respect for handling everything that they have had to deal with up until now, on their own. Just because you haven’t understood it, doesn’t mean that it hasn’t been happening without you. Thirdly, have faith in yourself. You cannot take away what they have but you can improve their situation immeasurably by learning everything about the condition that you can. There is so much information now - read, read and read more. As every child with an ASD is different you may find some books that don’t seem to tell you anything about your child. Move on. Every so often you will find a book that seems to have been written specifically for you, where you will go wild with the highlighter pen, take copious notes and send copies to your relatives, friends, the school.Professionals with odd job titles will start making contact with you to book appointments. Be prepared. Make sure that everyone that comes to see your child tells you whether they are there simply to assess your child or to actually work with them. If it is an assessment, ask when can you see the notes and what will be done with the results. If they are coming to work with you both, how often will they come and what are they working towards? You may find that this information comes freely, other times you may have to press for it - when a person has worked in the same role for a while they sometimes lose a little empathy. Ask as many questions as you can and ensure that you take an email address and their assurance that you can contact them with any further questions that you may have. If you think a support group would help you, join one. If you don’t, don’t. Be selfish - if you are invited to an event that you feel your child may not cope with - spare yourselves. You may lose a few friends but I can guarantee that you will hang on to the good ones. More than anything, understand this. You are the most important person in your child’s life and you are capable of affecting change. Happy, loving, great change. Be brave and go for it.With love and best wishes,One of you.x
hi - gettingthere's letter hit the spot many times. It's helpful to parents with newly diagnosed children. A while ago I posted saying I wish I'd known then what I know now. Information/knowledge is power. This site is full of info - I wish it'd been around when my son was diagnosed. Autism is a difficult to understand for us NT's....I never stop learning. The most important thing is that your child is an individual 1st and foremost and also has autism to some degree. I never used the words "autistic child" or "autistic adult". To me, that's the wrong way round. Yes, the autism + how it affects someone is certainly important + needs to be thoroughly understood, but the person, with their own personality, strenths, weaknesses etc always comes 1st in my opinion. We all wish the Drs cd give us a v detailed prognosis regarding how our children wd develop. Often it's vaguer than that. My son reached all his physical milestones at the expected times : crawling, walking etc. Sorry to the other parents who have loads of trouble with this, but potty training was literally a doddle. However, language didn't come until he was 5. Even now, in his 20s, he has his own language style. Yet, he cd write + count before he cd talk. Emotionally he is much younger. He has a devasting naivety/vulnerability. He has always had a gd sense of humour. So what I'm saying is the diagnosis hits you hard, then you're on a steep learning curve (unless you've been researching beforehand). Then you've got to do your best as you wd with any of your children, to help your child reach his/her full potential. Someone of it's unknown, that's life. A sw once sd to me "you must be proud of him." No-one had sd that to me before, but absolutely, yes, because he's had to overcome so much from the minute he was born. Totally proud.
Wow - thank you for this!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Thank you for sharing this. I have a son who has just been diagnosed, scatching around websites all day, driving myself mad. reading this has calmed me down a little and has enthused me to ask questions, however silly they may seem. I am not alone, to not be scared of the future,to embrace it. xxx
Thank you - I am so glad that this helped a bit and best of luck to you. The horrendous days will become fewer - stay strong and remember that no question is silly. People need to understand that none of us understand anything about autism until we are thrown into it. Take care xx
Thank you for this, it sums up exactly how I feel at the moment waiting on a diagnosis, what does all this mean? How can I help? etc. It's nice to know I'm not alone. x
THANK YOU! We got a diagnosis for my daughter today, she is on the autism spectrum, we will get more detailed information next week. Shortly, I feel dead.