I thought I'd tell my story about the cons of getting diagnosed in childhood (8 and a half years old to be precise, which may not sound early but is early for a verbally articulate and socially-driven female with typical/mild symptoms compared to other females even with more prominent symptoms. Please try not to post harsh judgement or assume that my trauma about being labelled is implying that I think bad about all autistics, because I don't.
I started off as a typically developing toddler; learnt to walk at 11 months, was fully potty-trained before I was 2, and could speak full sentences by age 3. I was a happy, smiley, sociable baby, and was interested in other children and adults, and my parents said I pointed to things. My mum said that when I was 2 my grandmother came into the house, who I hadn't seen for about 6 months, but straight away I pointed to her and said ''grandma!'' like I remembered her face. That's just one of many examples of normal social development I demonstrated as a toddler, plus I have a lot of baby photos and even old videos of me and I seemed like a normal little girl (smiling with expression in a lot of photos, playing well with other toddlers, etc).
Anyway, I was progressing so much at preschool that both my parents and my preschool teacher knew I was (socially and emotionally) as ready as my peers to start school the following September. But on my first day of school (at age 4 years and 5 months) I suddenly behaved very out of character, being disruptive in the classroom, pulling the teacher's hair, kicking the other children, hiding under the desks and not wanting to go outside. My parents were shocked and surprised, as they'd never known me to behave like that before, not as preschool or at any parties. I suddenly went into myself and didn't want to speak, and just looked frightened like I was spooked by something. The teachers thought my behaviour was a result of abuse at home, which caused great stress for my parents because they did NOT abuse me in any way. But while I was seeing a child psychiatrist I had to undergo a lot of body examinations to prove I wasn't being abused, which was rather stressful for both me and my parents.
I quickly calmed down at school when I was moved to a class that only went to school part-time for the first year, and although I had trouble sitting still and following rules, I still co-operated and mixed with the other children. But after it was proven that I wasn't being abused, the assessors and all that didn't stop there. They started assessing me in the classroom, watching and reporting every move I made even if it wasn't inappropriate. I was making good progress socially while getting some extra help with my reading and counting, but they were still adamant to diagnose me with something.
My parents were quite oblivious to labels, and were also afraid of them too, and if they had their way they probably would have refused a diagnosis. But I think they got the impression that if they didn't go through with getting me diagnosed then they might be flagged as ''bad parents'', so basically they were forced into it. And being a 4-8-year-old child I had no choice but to be dragged to all these assessments and appointments, which I hated and would cry and scream all the way there in the car. After 4 years I got a diagnosis of Asperger's syndrome, although it was also put down as PPD-NOS, and from the day I got diagnosed my parents thought it was a good idea to let everybody and their dog know what I was labelled as, until even my whole class knew. I hated it being known by everybody, and as soon as my classmates knew, they suddenly started treating me differently, which got worse as we got older. It seemed like they thought Asperger's was an infectious disease, and kept their distance. So after that I started to feel resentful about everybody knowing, whether they were understanding or not.
Also, from the little information I did know about autism, I felt it didn't describe me at all. ADHD described me much more but was refused that as a child because it was known as ''naughty schoolboy syndrome'' when I was a child, and because I wasn't naughty at school (apart from my first few days) and I wasn't a boy, I didn't get diagnosed with the label that fit me the most. So I went through life being unable to come to terms with the label I did have, feeling kind of traumatised by it, feeling isolated and singled out because of the diagnosis more than the condition itself, and just feeling confused. I felt like I was constantly being watched by the teachers, even when I went to the bathroom I got paranoid in case they were watching me.
I got diagnosed with ADHD in adulthood, thank God. Now I know who I am a bit more. But as an adult I have decided not to let the Asperger's diagnosis follow me around like it did in childhood and adolescence. So my workplace or my husband don't know I was diagnosed with the Asperger's, and I feel so much more free this way, and when I got diagnosed with ADHD they confirmed PPD-NOS was more what I had rather than actual autism.
I seemed to be born with anxiety with no known cause, also I had physical hearing problems as a child so both those might have contributed to my behaviour when I started school, as in being unable to hear the teacher properly and feeling frustrated and isolated. My mum was NT but had an anxiety disorder as well, as anxiety and depression does seem to run in my family, so I think I inherited it too.
I still sometimes feel angry and confused and find it hard to understand myself or autism, even though I've been on autism forums for the last 13 years and have learnt a lot of stuff about it that I wish I had known as a child. My mum had a Tony Attwood book about it but I angrily scribbled in the pages and wrote bad words about myself and autism. When I was first diagnosed at 8, I swore at my mum for the first time in my life, because she had told me off for being rude so I replied ''don't you tell me off about that, Mum, I have ****ing Asperger's syndrome!'' She knew I was just angry about having something nobody else I knew had, and I could tell my parents didn't want me to have it any more than I did. They loved me of course, but sometimes I felt they wish I was somebody else, like a well-adjusted NT child like all my cousins and classmates. My condition had an affect on my siblings as well. I was extremely close to my sister and although she displayed a few peculiar traits she was never assessed or diagnosed with anything, and got on better socially through school (even though she was shy and delayed academically). Being so she was my best friend growing up, I became too attached to her and was then a burden when she was a teenager and wanted to hang out with her own friends. It wasn't that I was jealous in a narcissistic way, it was just that I wanted to have friends too, and she wouldn't let me be friends with her friends, and so I felt worthless and lonely. Also my problems affected my brother. He became reserved and depressed and tried to commit suicide too, because of the way me and my sister took up most the attention as kids and my brother got more or less forgotten.
Then I blamed myself for my parents splitting up. My dad was often out drinking, which my mum resented, and I felt it was my fault that he was always out, and the atmosphere it created in my home between them made me misbehave even more and I wanted to get out and have a social life but had no friends to hang out with or confide in. It was a very heartbreaking time.
Then, on top of that, my mum ended up getting cancer and dying at a young age, and whenever people say ''stress causes cancer'' I clench up inside and wallow deeply in guilt, because I know I brought on a lot of stress for my mum, stress that her siblings didn't have from their kids, and I felt like I was a bad daughter to her.
So it's no wonder I'm often in deep pity about my neurological problems. I was a challenging child, had undiagnosed ADHD, and had high emotional stress levels, anxiety and prone to tantrums. Although I have mellowed a bit now and have learnt to show more respect to my family and to appreciate my life, I still have deep issues that often make me beat myself up inside. I've had a few therapy courses but 50 minutes a week is nowhere near enough time to delve into my issues. I need like an hour a day for a few weeks. I'm undergoing therapy at the moment but they can only talk about one thing at a time, and at the moment it's about bullying I have suffered in the past and recently, some on online forums. Because of that I do feel reluctant to post this as I fear people are going to call me those names that I was called before, but being so this site is a nicer place hopefully none of that happened here.
And you haven't heard the whole story, but this post is long enough so I thought I'd leave it there. Thanks for taking the time and patience to read it, as I feel better when being able to share my story.
I started off as a typically developing toddler; learnt to walk at 11 months, was fully potty-trained before I was 2, and could speak full sentences by age 3. I was a happy, smiley, sociable baby, and was interested in other children and adults, and my parents said I pointed to things. My mum said that when I was 2 my grandmother came into the house, who I hadn't seen for about 6 months, but straight away I pointed to her and said ''grandma!'' like I remembered her face. That's just one of many examples of normal social development I demonstrated as a toddler, plus I have a lot of baby photos and even old videos of me and I seemed like a normal little girl (smiling with expression in a lot of photos, playing well with other toddlers, etc).
Anyway, I was progressing so much at preschool that both my parents and my preschool teacher knew I was (socially and emotionally) as ready as my peers to start school the following September. But on my first day of school (at age 4 years and 5 months) I suddenly behaved very out of character, being disruptive in the classroom, pulling the teacher's hair, kicking the other children, hiding under the desks and not wanting to go outside. My parents were shocked and surprised, as they'd never known me to behave like that before, not as preschool or at any parties. I suddenly went into myself and didn't want to speak, and just looked frightened like I was spooked by something. The teachers thought my behaviour was a result of abuse at home, which caused great stress for my parents because they did NOT abuse me in any way. But while I was seeing a child psychiatrist I had to undergo a lot of body examinations to prove I wasn't being abused, which was rather stressful for both me and my parents.
I quickly calmed down at school when I was moved to a class that only went to school part-time for the first year, and although I had trouble sitting still and following rules, I still co-operated and mixed with the other children. But after it was proven that I wasn't being abused, the assessors and all that didn't stop there. They started assessing me in the classroom, watching and reporting every move I made even if it wasn't inappropriate. I was making good progress socially while getting some extra help with my reading and counting, but they were still adamant to diagnose me with something.
My parents were quite oblivious to labels, and were also afraid of them too, and if they had their way they probably would have refused a diagnosis. But I think they got the impression that if they didn't go through with getting me diagnosed then they might be flagged as ''bad parents'', so basically they were forced into it. And being a 4-8-year-old child I had no choice but to be dragged to all these assessments and appointments, which I hated and would cry and scream all the way there in the car. After 4 years I got a diagnosis of Asperger's syndrome, although it was also put down as PPD-NOS, and from the day I got diagnosed my parents thought it was a good idea to let everybody and their dog know what I was labelled as, until even my whole class knew. I hated it being known by everybody, and as soon as my classmates knew, they suddenly started treating me differently, which got worse as we got older. It seemed like they thought Asperger's was an infectious disease, and kept their distance. So after that I started to feel resentful about everybody knowing, whether they were understanding or not.
Also, from the little information I did know about autism, I felt it didn't describe me at all. ADHD described me much more but was refused that as a child because it was known as ''naughty schoolboy syndrome'' when I was a child, and because I wasn't naughty at school (apart from my first few days) and I wasn't a boy, I didn't get diagnosed with the label that fit me the most. So I went through life being unable to come to terms with the label I did have, feeling kind of traumatised by it, feeling isolated and singled out because of the diagnosis more than the condition itself, and just feeling confused. I felt like I was constantly being watched by the teachers, even when I went to the bathroom I got paranoid in case they were watching me.
I got diagnosed with ADHD in adulthood, thank God. Now I know who I am a bit more. But as an adult I have decided not to let the Asperger's diagnosis follow me around like it did in childhood and adolescence. So my workplace or my husband don't know I was diagnosed with the Asperger's, and I feel so much more free this way, and when I got diagnosed with ADHD they confirmed PPD-NOS was more what I had rather than actual autism.
I seemed to be born with anxiety with no known cause, also I had physical hearing problems as a child so both those might have contributed to my behaviour when I started school, as in being unable to hear the teacher properly and feeling frustrated and isolated. My mum was NT but had an anxiety disorder as well, as anxiety and depression does seem to run in my family, so I think I inherited it too.
I still sometimes feel angry and confused and find it hard to understand myself or autism, even though I've been on autism forums for the last 13 years and have learnt a lot of stuff about it that I wish I had known as a child. My mum had a Tony Attwood book about it but I angrily scribbled in the pages and wrote bad words about myself and autism. When I was first diagnosed at 8, I swore at my mum for the first time in my life, because she had told me off for being rude so I replied ''don't you tell me off about that, Mum, I have ****ing Asperger's syndrome!'' She knew I was just angry about having something nobody else I knew had, and I could tell my parents didn't want me to have it any more than I did. They loved me of course, but sometimes I felt they wish I was somebody else, like a well-adjusted NT child like all my cousins and classmates. My condition had an affect on my siblings as well. I was extremely close to my sister and although she displayed a few peculiar traits she was never assessed or diagnosed with anything, and got on better socially through school (even though she was shy and delayed academically). Being so she was my best friend growing up, I became too attached to her and was then a burden when she was a teenager and wanted to hang out with her own friends. It wasn't that I was jealous in a narcissistic way, it was just that I wanted to have friends too, and she wouldn't let me be friends with her friends, and so I felt worthless and lonely. Also my problems affected my brother. He became reserved and depressed and tried to commit suicide too, because of the way me and my sister took up most the attention as kids and my brother got more or less forgotten.
Then I blamed myself for my parents splitting up. My dad was often out drinking, which my mum resented, and I felt it was my fault that he was always out, and the atmosphere it created in my home between them made me misbehave even more and I wanted to get out and have a social life but had no friends to hang out with or confide in. It was a very heartbreaking time.
Then, on top of that, my mum ended up getting cancer and dying at a young age, and whenever people say ''stress causes cancer'' I clench up inside and wallow deeply in guilt, because I know I brought on a lot of stress for my mum, stress that her siblings didn't have from their kids, and I felt like I was a bad daughter to her.
So it's no wonder I'm often in deep pity about my neurological problems. I was a challenging child, had undiagnosed ADHD, and had high emotional stress levels, anxiety and prone to tantrums. Although I have mellowed a bit now and have learnt to show more respect to my family and to appreciate my life, I still have deep issues that often make me beat myself up inside. I've had a few therapy courses but 50 minutes a week is nowhere near enough time to delve into my issues. I need like an hour a day for a few weeks. I'm undergoing therapy at the moment but they can only talk about one thing at a time, and at the moment it's about bullying I have suffered in the past and recently, some on online forums. Because of that I do feel reluctant to post this as I fear people are going to call me those names that I was called before, but being so this site is a nicer place hopefully none of that happened here.
And you haven't heard the whole story, but this post is long enough so I thought I'd leave it there. Thanks for taking the time and patience to read it, as I feel better when being able to share my story.
