Published on 12, July, 2020
Hello there, I am a mother of a 14yr old girl who I am worried about. She has always been demanding - not naughty, just different. I don't know where to start with this really as I just want to hear from those who have had personal experience. There is a danger of me rambling but here goes...
I've spent years of feeling that something, apart from her dyslexia - which I had diagnosed privately, was not quite right. Finally, we are now 'in the system'. To cut a very long story short, She has now been seen by a Speech & Language Therapist; a Education Psychologist was requested but due to budget there weren't any available. The SLT has given Her a full and thorough report, indicating her concerns towards ASD. She was quite astonished that nobody had picked up on this before. However, she has also seen a doctor at The Edwin Lobo Centre who felt unsure as She does sometimes give eye contact etc. However, a lot of her social skills have been taught.
It is extremely difficult with girls as there seems to be so much ignorance out there, through nobody's fault. Teachers are expected to complete forms from doctors and yet they're not trained themselves. Plus, even doctors seem to only go from text books and tick boxes.
My daughter is in such an unhappy and anxious place. She so desperately wants some friends. My heart breaks to see her so lost and outcast from her peers. Yet because she is well behaved at school, like the SLT suggested, she has flown under the radar.
Can anybody please help me with a route to a quick diagnosis as I have been advised that this is what she needs. She is in year 10 and time is running out.
Thank you.
Hello, my name is Ferret. I am autistic.
As an overview of your comment i would say: i echo IrkaBlue, you are not getting the right support. keep going. don't give up. your daughter needs to be reassessed.
Solution: do your research. familiarise yourself with autism and all that it is. get a list of attributes, go through it, tick off the ones that fit your daughter - there are many online. arm yourself with information. build your case.
In addition: outlined below is information to give you the 'inside' perspective on this. as best i can. as this is what you currently lack in order to help you, your understanding of autism, to be armed correctly with the correct information, and for your daughter and to help you understand a young mind which at present probably doesn't understand itself (although instinctively does) and yet is expected to give the right answers so everyone (clinicians) can do their job right.
A breakdown of your query:
"I just want to hear from those who have had personal experience..."<---mothers or autistics?<--see? literal, autisic, there are too many variables present in your sentence so i need to find the right answer - does your daughter do this at all? one autistic flag is repeated questionning
i am autistic. i will provide as much information as possible. please take all information as 'open'. please bear in mind as autistic i am blunt, i do not mean to 'hurt' by any comments made. i slipped under the radar. my autism was spotted from birth through to age 1, again at age 3, age 4, age 7, age 10, age 12, age 14, age 16, age 18... and onwards. no-one ever said: autism. i have been misdiagnosed all my life, until recently and that is ongoing.
"I have spent years of feeling that something, apart from her dyslexia.... was not quite right."<--- i display/struggle with dyslexia - i have not been formally diagnosed as dyslexic, though it was picked up in pre-school/school. i was "not concentrating enough on what i was doing, pay attention more to what you're doing, you're being lazy." i have always called it 'wordsoup', i am known for it, both in speech and written. words come out wrong, are written down wrong often in phonetic patterns ie babytalk/phonetic alphabet 'ah' 'buh' 'cuh' 'duh' as opposed to 'ay' 'bee' 'see' 'dee'. in my head, when i write i translate all letters when spelling into phonetic, i am literally re-routing through a part of my brain to bypass an autistic 'gap' and compensating so as to appear 'normal'. i talk 'words' inside my head. written wordsoups come out like gobble-de-gook eg fraze = phrase. the reason this occurs/displays itself and is intermittent in nature is due to overload/capacity issues ie when i get tired<--overload/too much information to process either from environment or people speaking to me or things i cannot process, concentration and focus get more difficult, i start to regress to simpler forms of communication.
"The SLT has given her a full and thorough report, indicating her concerns towards ASD."<---good, you have one person on your side, keep going, don't give up (I agree with IrkaBlue here)
Suggestion: why not go through the report yourself for your own purposes of information gathering and pick out items which you know fit your daughter, and then once that is done, think upon them. there will be a wider picture (think of it like a jigsaw) of pieces that can be added. they may appear subtle to you, as you are familiar with your daughter and you think 'that's just her', but actually you may be seeing the 'autism'. more evidence will help you.
A contentious suggestion here: that autism is NOT personality. personality is different, it's 'inside' or 'underneath' or 'hiding behind' and is glimpsed only now and then.
Also: why not go back to the SLT and say 'HELP'. because you do need help and so does your daughter. you need support. get people to help you.
"However she has also seen a doctor at the Edwing Lobo Centre who felt unsure."<---a gatekeeper. feeling is not a medical perspective, personal feelings shouldn't come into it, evidence should. Therefore: gather evidence. Keep going. Don't give up. Gather evidence, more evidence. Present the evidence. Solve the case.
"She does sometimes give eye contact."<---again, See IrkaBlue's comments. Eye contact is forced, not natural, it is in fact exhausting as it requires maximum concentration for us. often 'down time' is required after prolonged exposure to eye-contact. look for the flags, your daughter will be displaying them but most probably in subtle ways so as not to draw attention to herself eg in my case I was told "stop doing that, people will think you're weird" and "behave properly or people won't like you." so i hide. i control the urge to fidget until i am alone. what i also do, which has been observed and commented on "take that look off your face" is that i GLAZE. i appear not to be listening, or appear bored (often i am but that's a different matter/separate issue entirely) but when in high intensity environments, i can only maintain focus on what is most important at the time, and that is getting through it so i can then go and be somewhere quiet.
Note: IrkaBlue's comments on masking are important. i will expand and discuss the two different issues: Masking; and Mirroring, as the two are different and both done by me and i suspect many other autistics, though they would have to corroborate.
Masking: think of it literally like a mask, something put 'in front of' or 'held' that obscures what is behind, that being behind: autism. the mask is constructed by way of creating a composite jigsaw of 'good' things, things which have been observed as getting the 'right' responses. eg. a person smiles, people like them. this is a jigsaw piece that is then fitted into the mask in order to create what is most suitable for any given social or public situation. masking is a code: it is a set of codified signifiers that simulate 'normal'. there are many masks, each one designed specifically for a specific environment or interaction.
Mirroring: think of this literally like a mirror, something that 'reflects back that which is around it'. but we reflect the lie, as the lie is more acceptable than the truth. truth gets us noticed, lies let us hide and go under the radar. it is a deflection technique, it is a defence technique, it is a way of 'going under the radar'. in situations of social and public, in order to remain focused and maintain concentration and just 'get through it', mirroring comes into play. it is a flat plane, it is a shield, it blocks the invasiveness of other people. autistics need aloneness, ie space and being alone and quiet. but we can't get that in 'normal' life. to stop, prevent, or deflect intrusion from those around us "are you alright, you're quiet there *prod in the arm by other person to get attention*" what we do is this: *looks up, smiles, makes eye contact <--mask--> "Yeah I'm fine, I was just <insert deflection comment to direct attention away from us onto something else> *then go back to what we were doing in the hope people leave us alone*<---this may or not be corroborated by other autistics as it is my observation of my own autism in action. i am on the fringes here, as i do not have phd after my name, my only qualification is: i am autistic
Note: the reason your daughter probably made eye contact in the assessment was because she was on guard and knew she was in a hostile environment for her, so the best way to 'get through' and 'get back' to her safety of sameness in her life was to 'hide in plain sight'. she was, i suspect, in what i call 'pass the test' mode. pass the test mode is instinctive, it is another masking/mirroring thing. additionally, in test scenarios, we want to give the right answer, but we're not being asked the right questions in test scenarios, so we go 'undiagnosed'. equally, we want the situation over and done with as quickly as possible.
"It is extremely difficult with gilrs as there seems to be so much ignorance out there..."<---yes. it is a neurotypical world. autism is the elephant in the room. often much of the diagnostic criteria for testing autistics is laid out and laid down by people who are not autistic. Garbage in, garbage out is the computer term i will coin/employ for this.
Note: autistics are literal. ask the right question, get the right answer. but you have to know what the right question is. and often, autistics ARE giving the right answer, but it's not being understood, as the answer is so high functioning and all encompassing, the full extent of the picture is not being 'seen' by those on the other side. It is like trying to describe an elephant to someone who has never seen one... there are glimpses of the elephant, but it's not understood.
"My daughter is in such an unhappy and anxious place, she so desperately wants some friends."<---she needs someone who speaks her language. imagine going through life knowing there is something not right, and speaking and no-one 'getting it'. As much as autistics need aloneness and downtime, we need to share, we need what i can only understand (as an autistic) and explain as: parallel. we need to be separate but part of. we can sit in a room with chaos around us and be perfectly happy in our quiet little world "you're in your own world, stop ignoring people it's rude", but ask us to focus and participate and we cannot, so we mirror and mask. we look at things (the world) indirectly, from the side (which is why i suspect we find direct eye contact difficult) as we are looking at EVERYTHING, the bigger picture, and the bigger picture is made up of sensory mass of information, sound, touch, smell, speech, environment, space, textures etc.
Another note here: from personal experience coupled with observation of patterns, your daughter is entering the 'zone' in terms of age when autism really starts to show itself <--this is my opinion). her anxious state is a flag, that she is starting to struggle and needs support, and so do you.
Observation: your terms that you use to describe your daughter: Demanding, not naughty, just different. <---it is important to be absolutely spot on about how to describe your daughter. this will help the diagnosis and anyone who you do get in front of to be able to correctly assess your daughter. think in autistic diagnostic terms/terminology ie start speaking the language. Demanding: do you mean: entrenched thinking? literal thinking? black and white? everything having to be right? must have the right things? need for sameness? difficulty dealing with changes in routine and environment? (my personal favourite of which i was described as a child "dumb insolent" and "dog defiant"
(and yes the terms i outline above in respect of myself are negative but i'm just putting them here as evidence from third parties in negative context must be included as it can also help your daughter - include the negative experiences too that your daughter has perhaps encountered eg. bullying, slurs, verbal criticisms from either peers, teachers (of schoolwork eg dyslexia), bad behaviour in class, tantrums etc.)
On a personal note: I was a very quiet child "dumb insolent". I will not go into the details of my life for many are negative and there is no need. Suffice to say: yes, we go under the radar. We go under the radar because: a) autism is a silent thing, it is inside, it only shows on the outside like a tip of an iceberg b) autistics by nature are peaceful creatures, quiet in nature and behaviour, we are (in my case) "willing horses". we try and try and try.
Also: your daughter's sense of desperation for friends. loneliness is, in my experience, an autistic thing. it is not, as far as i can understand from speaking to others (neurotypicals) the same for others as it is for us. loneliness for me is me being aware that there is something very different about me "you're not picking it up, you're missing out on so much" and "you're not behaving in the right way to make people like you", "why aren't you concentrating on what's going on?", "be like everyone else", "you shut yourself off, you exclude yourself it's your fault" is the external view from others. it is okay to be lonely ie autistic. the loneliness is easier to bear if it is understood WHY. your daughter, i think, will become less anxious (probably because currently she's trying to give the right answers at the moment and they're being 'read'/interpreted as wrong by her). i knew instinctively there was something different about me. i was never given the answer ie autism.
A possible solution: this is only a suggestion, but may help, in that it will help gather more evidence. sit down with your daughter (in a safe space, a peaceful space with no pressure and no expectation and no 'pass the test mode') and ask her to describe everything she feels, she thinks, what she thinks is happening, why she thinks she struggles. write it all down, everything she says, even if you think it's 'weird'. don't try and get her to explain what she says. don't try and understand it yourself. your daughter understands, all that is needed is for it to be on paper so she can 'tell it in her own words'. the picture will be there, it just needs to be seen. see the world, her world, from her perspective. this may help.
Finally: Time is not running out. Don't feel that. There is always time. Autism is a slow process of understanding, in and of itself (we take a long time to process things "you're so slow") but it will get there.
Bon courage.