Published on 12, July, 2020
Hello, I have just joined the community as i feel like i have no one to talk to... so i'll start by saying Hi!
I have a daughter who is diagnosed ADHD and awaiting an ASD referral, all in hand and happy with help and support i receive from friends, family and professionals.
I also have a son who unfortunately, I am not getting the same response in support for. He is on the ASD waiting list (hopefully january time) He has been on a one plan since he started reception and school has many things in place to help him cope throughout the day, including ear defenders, social stories, feelings cards and quiet breaks.
I am always being told I am either being an over-baring mother, I'm mollycoddling, I'm too protective, I'm too over the top by even my closest friends and its breaking my heart. I know my son and I know whats not 'normal', yet I'm sitting her feeling like I am going crazy and no one listens to me. I just cant cope with the negativity anymore.
He lives talks and and acts in the land of nintendo, every task we do or walk we go on is a level on mario, our conversations are mario topic, we never really talk about anything else, no matter how hard I try to talk about other subjects, he ingores me and continues with his thoughts. He must always have my attention on him and his interests and cannot understand when I have other things to do or I am in the middle of a conversation.
I have been informed by professional workers that he has sensory processing disorder. Hes extremely sensitive to noise, taste, texture. He will vomit when over exposed to these things, for example, going to busy soft play centers will make him vomit. He can only eat certain foods without vomiting and has a very small food selection he feels safe with. I am always trying to encourage him to try new things even if it is just touching or smelling it. I'm not able to give him different brands because it will cause this to happen still.
He is selective mute, with final word disfluency, he really struggles to get his sentences out and causes a lot of frustration for him when people don't understand what hes saying. I am always told by everyone around me, there is nothing wrong with his speech and I'm over thinking it. which hurts because I see his pain and hurt from not being understood.
He doesn't really play, he has a select few toys he sticks to which involves organising them and will repeat the same games with them. He does not enjoy playing with other children. If a child tries to approach him to play at a park he will go mute and hide. There will be little to no communication.
I have so many things I could sit here and write but I feel like I would be here all night... so if you've read this, thank you... I guess I'm just hoping to be heard.
Hey pixie, I don't quite understand it myself but I'm so grateful for the responses here! I think what people are struggling with is autism is an umbrella word, so, with so many varying factors, it's easy for two people with autism to display completely different. I believe that if Asperger was still it's own diagnosis, my boy would be that, whereas my girl is not at all. they're so alike in such different ways so people do not see the connection.
Hi and welcome.
I'm a bit confused as to why you are being given help and support for your daughter but not your son, and that it appears you are being told you are overbearing, mollycoddling and over protective with your son, but not your daughter? is it that they won't accept he is autistic because he doesn't have a "formal" diagnosis? The obsessive special interest, sensory issues, play patterns and selective muteness all point to ASD, so I don't understand why others can't see that! Hopefully it will change when he gets a diagnosis.
You say that he has things in place at school to help him get through the day, so the school must surely acknowledge that he has special needs? Can they help with getting a referral to a speech & language therapist?
Keep chatting to us here if it helps, and don't give up hope.
Hi KH
Welcome and thank you for sharing your story. I am sorry that the people close to you are not supportive for you and your family at the moment. Unfortunately I hear too often if people don’t understand something they kind of pretend it isn’t there. Could you perhaps find some basic educational information to send on to them to try and give them a better understanding of what neurodivergence means? It is very unfortunate that you don’t have that support around you at this difficult time which is a shame.
My son is age 9yrs (year 5) he is masking a huge amount both at school and in social situations. We have not disclosed that he is autistic to anyone else yet as we would probably get a similar response from people close to us as you have shared. He has his assessment in a few weeks which has taken over my head with worry and anxiety as this is very important for him to get an early diagnosis. The annoying thing for me is if you explained to people you had an injury or some type of disease it would not be questionable so why must we convince anyone else about being neurodivergent.
You sound like an amazing mother to your children who is doing her best for their future so as not to struggle as many late diagnosed adults have.
good luck
You are an amazing mum! You know your child better than anyone else.
40 odd years ago my mum saved my life by knowing that I did not show pain like other people. By insisting and contradicting two different doctors she got me to hospital in time before my appendix burst. (I was only diagnosed this year - so she didn't think of me as autistic, but she knew me better than anyone else could)
Other people do not know, or understand or even perceive how we act properly. You know best., You are amazing.
Hi and welcome to the community! I also red your post. You are not crazy, you are right. I hope your son will get his diagnosis and support very soon. I can very much relate with my childhood to what you described, in fact I’m a female and my interests were different (there were trams) but what you described to me looks familiar, but I know it’s not normal. I also see that you are a good and loving mother, maybe encouraging your friends and family to educate themselves about autism would help. If they are willing to do it. I wish my mom cared for me and my needs as you do for your children.
You’re very welcome. I am sure many of the forum locals will give you some quality advice too. It’s a bunch of good people on here.
Thank you so much for replying to me! The pain I feel is that people are saying I am causing all of his issues, I am proud of my little boy, he is extremely intelligent for his age and is an incredible math whiz at the age of 5! He spots numbers everywhere and loves watching the clocks change! I fully believe it is indeed genetics, ASD runs in my family. I am not overcome by the label, more there lack of support and care toward myself and my boy.
Thank you again Yellow tree
And heard you are. I hear you. I understand that you must be sensing the pain that your son is experiencing. You just want the best for him. You are not going insane at all. You are right and they’re wrong. Your his mum not them. You want the best for your kid I get that but maybe you wont get that support from some people. You are heard here though. We all know the pain and struggle. Just don’t go down any rabbit holes of thinking that autism is caused by vaccines or something. Many of us fall down there. I know that autism is genetic and has been around for hundreds of years. Everyone who gets it suffers to some extent but you can help your son by embracing his gift the way it is. It’s a gift. I mean it can be! Your son is special. He is quiet and shy. But many kids before him have been shy and quiet and will continue to be for years to come. Shyness and quietness can be treated. Don’t let the label overcome you. His focus on Mario may be his way of shutting down from shyness. I’m sure you and your son will be just fine. You will get the support you need and so will your son. Thank you for coming to us to ask for advice. We are with you.