This one post has been written and rewritten more times than I care to count, almost impossibly hard to write. The words have become stuck in my throat, choking me as I try to expel the reality of where we are. I have had people question our motives, or belittle the situation to a flippant and cliché remark. Still we live with this every day and only now are others beginning to respond and see that we need help.
10 months ago I went to the GP with concerns for my daughter and her general mental state. She was always withdrawing, going days with hardly any communication. The only way I can describe her mood is to say it was dark. Her face was dark; her eyes looked hollow and empty. I couldn’t grasp where the bright light of my girl had gone. I didn’t understand.
She had always hurt herself to some degree when distressed or cross, just pinching her arms or legs. Occasionally when it got really bad she would head-butt the wall or something hard. That’s just the way she was, how she had always been and no one ever understood how wrong her behaviour felt to me. It was always dismissed as a phase – like so many things are. Only this time she drew blood. Her frustration was so great, and her ability to express it so poor, that she scratched her arm until it bled. Unless you have experienced finding self-harm marks on your child you will never know how you will respond. We tried to talk to her but she just didn’t know how to explain it, how to describe how she was feeling. So we went to the GP to seek help and guidance.
I saw to different GPs who both dismissed the behaviour as a phase that she would grow out of. She was 12 and hadn’t grown out of it but escalated it! They just wouldn’t listen and I was dismissed as an over reactive mother. I was appalled at their dismissive attitude.
Then one evening before Christmas my girl took a razor to her arm and put a 4” cut in her arm. Phil and I stood at the bottom of the stairs knowing in our guts that something wasn’t right. Phil ran up the stairs to find our girl sat in the bathroom with her arm covered in blood. It wasn’t until we were with her that she screamed in pain. She didn’t even remember doing it! How do you respond? Rush her to the hospital where she can be seen straight away, be surrounded by people giving her attention and possibly run the risk of her perceiving positive reinforcement for her actions? What do you do? At that point the mother in me shut down a while, you have to. I became almost clinical in investigating her wound and asking questions of what she used, pressure, did it hurt, can I see subcutaneous tissue or are the cuts too shallow to have caused any major damage. As a mother I wanted to scream and shake her, ask her why she felt the need to do this to herself. What had I done wrong? What had I missed? Did we not do enough for/with her? Why? But it just wasn’t about me, it was about her and wherever she was at that moment.
The fact is we may never fully understand why, it is what it is. I checked her wound and it was superficial thankfully she had cut at an angle so didn’t break too far in to the epidermis. I cleaned her up, cleaned the wound and dressed it. I cleaned up the blood from her arm, her hand, her clothes, the stairs, the bathroom and put the blood stained towel in the wash. I hardly spoke a word, I feared that if I had I would’ve lost control, wept and most likely alienated her even further. The next day I took her to the doctors where the nurse checked her wound and redressed it with steristrips and fresh gauze. She sent my girl to the waiting room and took my hands, looked me in the face and said ‘You did the absolute right thing! She needs professional help. Don’t take no for an answer anymore! I will help you.’ We went out to reception and booked another appointment with another GP, the third I would have seen by then. The nurse assured me she would prep the doctor before I arrived, and she did.
It took my daughter reaching an unacceptable point in her mental health before the GPs finally peeled their faces away from the computer screens long enough to look at her and listen to my concerns. All too often we accept the wrong answer from people we perceive as the professionals who know what they are talking about. In some instances, especially when it comes to our children they do not know best.
For 12 years I have struggled with my daughter’s behaviour. Individual teachers identifying issues but never elaborating or discussing further, as if I should know what they were inferring. I have been accused of being slightly ‘Munchausen by proxy’ by Health Visitors and GPs when I have taken her back to them to discuss certain behaviour that just didn’t seem normal. So many little things that in retrospect suddenly start to make sense.
My daughter and I spent three hours with a child psychologist talking about how she was growing up, things she finds easy, things she finds difficult. Three hours going over 12 years’ worth of her life to finally be given an answer, a confirmation of something I always knew was there but didn’t have a name for.
“I suspect your daughter is high functioning ASD. She is also sleep deprived and depressed.”
These two sentences felt like finally being able to breathe out. My whole body felt like a weight had been lifted off my shoulders. Something I knew in my very being had finally been validated. As a mother I felt empowered to push harder than ever before to get help for my girl. To release her from the captivity of being unable to express how she felt.
This is only the start of her journey. We have had appointments come through already for CAMHS, the school (once resistant to providing help) are finally bringing in support for her, and we finally have a direction in which to move forward. We now have a greater understanding of where she is and how to help her.
I must add that for us diagnosis is not about labelling our child. It is not about excusing her behaviour or brushing things off as ‘being autistic’. It is a tool to be used to empower her, to cut through the judgement of being different and show people that she is capable of wonderful and creative things. She doesn’t feel things as we do; her perspective is different from ours but that is ok. She is unique in a beautiful way.
Diagnosis is a tool to educate others rather than for confining or overshadowing her.
I think in all cases where children are diagnosed with anything we must be careful not to allow them to be defined by it. Instead we need to empower them to use their diagnosis as tool, to encourage them to see the rest of the world with new eyes and for the rest of the world to see and appreciate them.
My daughter may have autism, but she will not be defined by it.
We have a long road of appointments ahead, it will be tiring and I have no doubt there will be plenty to learn about both for her and us. However it will be worth it, because she is worth it.
PS – Due to the personal nature of this post, I assure you it was written and shared with my daughter’s permission. She read the whole thing and I made sure she was happy with it before I posted it.