My eldest child is 7 years old, and received his official Autism diagnosis within the last 12 months. It has been a very long 7 years full of battles against the system and against ignorant people, especially within the education system of the UK. It has worn me down over and over again and I have had to fight for support for him every single step of the way, and am still going to have to, but now I’m armed with an official diagnosis so things are that little bit easier.
I’ve often written about my boy and his additional needs, he also has Sensory Processing Disorder, and I like to share our journey to encourage others and help them feel less alone. I guess this is what this post is about, not feeling lonely in your fight for a diagnosis.
I’ve been told so many times that my child definitely doesn’t have autism. He can maintain eye contact, he can speak, he notices if something is removed from in front of him, his reading and writing skills are above average, he has friends, he eats ok etc etc. I’ve been told by GP’s, paediatricians, and school SENCO’s that he is absolutely fine, that he doesn’t need support, he definitely is not autistic and that they just don’t see what I am talking about and he will grow out of it. Do you know how this makes you feel? Horrendous! On top of the guilt you already feel for knowing your child is struggling but you cannot help him, hearing people basically say you’re making it all up is really disheartening and leaves you feeling pretty hopeless. BUT do not give up. If your gut is telling you something is not right then keep on keeping on until you get the answers your child and your family so desperately need.
I’m not one for sitting back and taking no for an answer, I never give up where my kids and my family are concerned I fight their corner every inch of the way, but boy is it hard hen you’re dismissed over and over again. You soon start o question yourself and your sanity, but don’t let it do that to you. Remember your focus, and that’s your child.
To cut a long story short we eventually got referred to a child mental health service after 5 years, and upon his initial meeting the doctor said to me that they think my child is on the Autistic Spectrum and has anxiety, and would be assessing him for this. After a few assessments they reached the diagnosis of Autism Spectrum Disorder and anxiety. I was so relieved. I didn’t think this would be my initial reaction but it was. Years of battling other people for support for my child had been worth it and now this little piece of paper confirmed what we had suspected all along and now this little bit of paper meant that no longer could I be scoffed at by education professionals. My child and his needs would now be taken serious!
Don’t let people push your concerns away, don’t let them silence your worries, stand up for what your heart is telling you, it will be a huge battle, but worth the fight. If I’d have listened to processionals and let them override my gut instinct my boy would be classed as neurotypical and would not get any extra support at all, and this would be detrimental to his emotional and mental health as well as his academic progress.
Never let anybody tell you your child is fine ‘because they’ve seen children much worse than them’, never let anyone dismiss you or your concerns. As a parent your gut instinct is usually right, follow it, and don’t give up. There is light at the end of the tunnel, the tunnel just may be longer than you had hoped.