Hello! First post... wish I could make people understand :(

Hello,

I’m not even sure I belong here! My 9 year old son struggles with handling socialising and emotions, while being completely obsessed with animals, wildlife and conservation issues. After years of making excuses “it’s just a part of his quirky personality”, “he is the youngest in the class” etc etc  I decided 18 months ago that things definitely weren’t right, spoke to the school and took him to my GP to talk about my concerns regarding autism, possible Aspergers and anxiety. School thought (and still does that I am making a fuss about nothing, he is meeting all his academic milestones ) GP was more helpful and referred us to CAMHS They said it could be handled at school and referred us to step 1 which was basically councelling. Back to the GP and we were referred to paeds. In December we were seen by paeds who said the referral went to the wrong place he was a hospital consultant and we should have gone to community paeds but he was certainly on the spectrum and we needed to be screened. Last week we were seen by CAMHS step 2 who gave us some helpful CBT exercises for the anxiety and told us we needed to be screened for ASD. We have now waited about 18 months in total. Has anyone else waited this long?

No one understands what we are going though. We are losing friends that we have had for maybe 20 years. People see what they want to see. People see a child who doesn’t behave and parents who don’t discipline effectively. What they are actually seeing is a child who doesn’t understand the details of acceptable social behaviour and parents who are at the end of their coping mechanisms. I wish I could make people understand what we are going through.

Please tell me other people have felt like this. I’m having a bad day today and I feel so lonely and stressed that I have had to fight the system every step of the way.

Thanks 

  • No one understands what we are going though. We are losing friends that we have had for maybe 20 years. People see what they want to see. People see a child who doesn’t behave and parents who don’t discipline effectively. What they are actually seeing is a child who doesn’t understand the details of acceptable social behaviour and parents who are at the end of their coping mechanisms. I wish I could make people understand what we are going through.

    I’m sorry to hear this, unfortunately there are a lot of ignorant people in the world and all we can do is try our best to educate them.

    I am not a parent of an ASD child, but rather someone with Asperger’s Syndrome. I can tell you that my mother could absolutely relate to what you have said, and that many other parents of ASD children could too, so you are most definitely not alone in this and some people absolutely understand what you are going through. My brother’s social services file even has a statement saying ‘there is nothing wrong with this child, the mother has serious issues’. That comment was made before my brother was diagnosed with ASD, but it’s just another example of the ignorance that must be fought for the parent of an ASD child. Just know that you as the parent knows your child best, and that you know why your child is how they are (as does every autistic adult on the planet), and try to forget the ignorant views of those who do not understand. 

    The waits for diagnosis are far too long in many areas, and it does lead to added stress for families unfortunately. In an area near me the wait is 48 months at present - yes, that really is 4 years! I hope this goes much quicker for you though. Have you tried asking how long the wait normally is for a diagnosis in your area?

    I wish you the best with the diagnostic process, and I hope that you get all of the help that you need as soon as possible. Do come to this forum if you feel like the rest of the world is not understanding you or your son’s difficulties, because you will likely find people here that understand entirely, and that can be a great help (it certainly is for me as an autistic adult).

  • New to this forum too but just read this and felt that you need to hear that you aren't alone. Everyone's story will be different but the frustrations and battling are common to many.

    Trust yourself as you know your child - those judging his behaviour don't. Let today go if it's been a bad day.

    Assume from your post that he's ok at school but the behaviour impact is outside. Think it's common that children hold it together in one environment but the effort doing that often leads to meltdowns elsewhere.

    Be kind to yourself. You are doing the right thing in trying to get an assessment. Keep going.

  • Hi - do you have a local ASD support group you could link up with? My son was diagnosed last year, but for at least 3 years we have been part of our local ASD group, and found it really helpful. We linked with people who understood what we were going through, in terms of getting a diagnosis etc. And it also helped with tips on dealing with behaviour, or even on advice about local days out etc. Hope you can get similar help, as it’s really useful - made us realise that others were in similar situations etc. Xx