Hello everyone,
we made the following experiences on the way to a diagnosis for our daughter. I feel very dissatisfied with how things went, and find myself not trusting the diagnosis. I am not so much rejecting it, but I am distrusting their methods, and am still not convinced either way.
My questions are a) whether this is how things are normally handled/whether this is also your experience or whether maybe it went especially bad for us, and b) what I can do to get a diagnosis I can put more trust in.
But for of, here's the situation we find ourselves in
Our daughter (one of a pair of twins) was born very early and has a range of different difficulties and diagnosises that make it sometimes hard to diagnose where exactly a difficulty she is experiencing comes from: She has a hydrocephalus, light visual impairment, precocious puberty, ... and CP. And since a major surgery two years ago, we believe she is suffering with mental health issues; CAHMS has not been helpful in more than 20 months with that...
Due to her being an ex-premie and because of the hydrocephalus, we were told early on, when she was only weeks old, to expect autistic traits as she grows up. The possibility of her having autism has therefore been a topic at every single paediatric appointment we have had with her from birth.
And indeed we observed some things come and go over the years and some stayed until now (she is almost 9 now).
To give you an idea, let me just talk about language. Over the year she has been seen several times by language therapists because she seemed to develop abnormally, but has always been rejected by the specialists because for them she was performing too well. She does have a large vocabulary that she acquired fairly early. But she always showed signs of not using language solely for communication, and generally had maybe more communication than language difficulties. For examlpe at one point of her life she seemed unable to tell colours apart. At first this was seen as part of her visual impairment. But after a session with the teacher for the visual impaired and several tests with her, she was sure that our daughter visually distinguishes colours. But because she still didn't seem to use and learn colour names, we thought it was a language thing, and she was send to a language therapists. There they told us, that she obviously understands the names for colours, and can speak clearly, so it had to be a processing problem. Probably she'd have difficulties finding the word, which was typical for children with a hydrocephalus. It still affects her now, but we hardly think about it these days, as we trained with her that she helps herself by bringing in filler words combined with pointing and describing ("Can you please give me that, err, red thing, round..." "Tomato?" "yes, the tomato please.")
Over the years she has also shown more and more traits of what you might call autistic speech pattern: Echolalia, she sometimes has difficulties with pronouns, and can take a liking to a sentence and repeat it all over. But that's hard to distinguish from just normal childish behaviour and a loving of words and language as such which she clearly has. She loves silly word games...
I have only spoken about her speech now, but similar things happened to other autistic traits: we see something, she gets referred to a couple of different therapists, and in the end we are left with: well, that's how she is, and it is quite typical for someone with a hydrocephalus or someone with CP: She has sensory issues, which are prevalent in children with autism, but also CP and hydrocephalus.
She has a lot of anxieties - but this, we believe, is actually a post-traumatic-stress thing, but discussions with CAHMS are the worst, and we are far from a diagnosis there.
She has a variety of behavioural difficulties, but also precocious puberty, mental health issues (see above), and is just overall the most determined and strong-minded person I have ever known (I wouldn't count that as a disability, but some might disagree).
Anyway, I guess what I want to say is: I do not want to talk away any of her autistic traits. I can clearly see them.
But in recent years for me the question of whether it really is autism, or something that she might grow out of, because more important. And speaking with a friend who was diagnosed with autism as an adult, and about how important it was for her. I thought it might also be important for my daughter, to know about herself as she enters puberty.
For me, there is a clear difference between saying: a) she has some autistic traits that she might be able to compensate for or overcome as she gets older, or b) she is autistic; these "traits" we are seeing are part of her make-up, is part of what she is, and something that at best will always feel wrong to hide "overcome".
An answer, so I thought at least, would have a real impact on everyday life for us as a family. Not expecting her to be as independent and able she we currently expect her to be (often with her not cooperating), would actually make my life as a parent easier. I find it currently extremely frustrating, trying to teach her some rules of interhuman interactions ("You don't laugh at people who are currently angry with you, even if you just want to ease the situation, this is not appropriate behaviour", "Don't touch your food." "Keep your fingers out of your mouth", " don't put non edibles in your mouth." "don't throw things"... the list is endless, and I don't get the impression that any of what I say even reaches her consciousness). If I gave up on all that, it would make my life much easier.
She is given all the objects I would allow a child of almost 9 years to handle. Glue, scissors,knives.... And she wants them, because everyone around her uses them. But I have to be constantly vigilant that she a) doesn't throw those things and b) doesn't put them in her mouth. It sounds weird, but she is a very intelligent young lady who is performing excellently academically. I don't understand why she can't interellectually just trust me, and follow the rules I tell her. I am sure she understand what I am saying. When I ask her why she persistently doesn't do how I tell her, she says: "Well, I don't want to." Well, I don't want advice on this field from you now. I just want to make clear how, if I knew I can't expect her to behave appropriately, I would make my life easier in taking the opportunity to cut herself in the lip away. But as things are, I feel I should give her the chance to handle scissors and maybe eventually learn to do so safely.
To name just one thing. It's an omnipresent topic for me. I generally believe in independence of children. My own upbringing may play a role. I think many of the parents around me don't trust their perfectly able children enough. In some ways mine are more independent then they are. (Of course they can run an errand at the supermarket for me!)
But generally, things didn't seem to improve for a long time, and I was getting really tired of being so dissatisfied (or pretend to be) with her all the time. So I asked the paediatrician for an autism diagnosis.
The paediatrician agreed but nothing happened. School was getting really impatient because they didn't know how to react to what might be temper tandrums or autistic melt-downs, and with our consent, they brought in a lady from an advisory team. Usually she visitis schools after an autism assessment to advice the school how to make life easier for those kids. This lady gave a range of advises, and essentially since last summer, school and we at home more or less operated under the assumption that she has autism. I say more or less, because we didn't have any CAMHS help after 4 referrals and 18 months time, we privately got her a therapist, and in autumn, things began to look up, and also her autistic traits seem to have significantly less impact. Which is why in recent months, I went back to the idea that these are difficulties that may not be unchangeable, but will come and go over her life, and be more or less prevalent as her life changes.
Now at the beginning of this week, the paediatrician came finally back with an autism diagnosis. I was very hopeful at first, hoping that I would finally get help, understanding my daughter better. - But nothing could be further away, and I feel so disappointed. So the paediatrician said: they got the paperwork back from school (the same people who are already operating under the assumption she has autism), and from their description it looked like yes, "we would describe this as being a autistic spectrum disorder". But it was up to us as parents, whether we want her to add autism to the list of her diagnosises, or whether we'd rather just continue to describe her needs as before, as this would make no difference.
And that's it!
I thought, she'd now refer us to a team who'd, I don't know, go through a series of tests with her. Find out, how this relates to her medical history. Find out more about what we can expect or can't expect her to learn. Help us understand how she perceives the world. And most of all, make a solid diagnosis based on that. - That this paediatrician is only deciding based on how school describes the child, rather than looking at her herself, makes me distrust this diagnosis.
Is this really how autism is diagnosed? By teachers?
Should I insist on something else?
I hope it has become clear, why I have difficulties believing in the validity of this diagnosis. How can I learn to trust it?
And also: has anyone here made experience with withdrawing a diagnosis? If we add autism to the list of her diagnosises, and it later turns out, that indeed, all the traits vanish over time, - is it really in practise as easy as that, to get her "un"diagnosed?
Thanks for reading this long post!
