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Autism Diagnosis - Is this normal?

UdosdottirUdosdottir Member Posts: 17 Connected
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!

Replies

  • Firefly123Firefly123 Member Posts: 440 Pioneering
    Hi I have 3 young adults with autism and other complex needs. Two boys and a girl my daughter learned lots of masking techniques and hid it pretty well until she started secondary school then the nightmare began. Having her two brothers on the spectrum made me quickly see she had lots of the same difficulties. Took almost 4 years for her to go through the process and finally get her diagnosis. Cahms were not much help tbh. my daughter also has mental health issues OCD and extreme anxiety and pica she's always putting tasting unedible things. Would say she's much more able than her brothers but the spectrum is wide and makes it more difficult I think to totally understand her needs.
    Yes I would say it does change over time and with the right help my middle son is now 21 and is at college doing well as a child I would never have thought this possible but he got diagnosed about 10 and for him I would say it has made a big difference he's passed some exams but still can't leave the house on his own.
    His brother was very intelligent passed his exams with A* but it is the social aspect he had to learn and still does not get it.
    So for me I learned just how big the spectrum is all 3 have lots of sensory issues.
    I think you could probably ask for a second opinion. In our cases the diagnosis was not given easily. 
    I wish you all the best x
  • poppy123456poppy123456 Community champion Posts: 18,398 Disability Gamechanger
    Hi,

    I totally agree that the spectrum is huge and you'll never have 2 people the same, much like with any diagnosis really.

    My daughter wasn't diagnosed until she was 17 but she couldn't talk until she was almost 5. Couldn't count at all until she was 7 and couldn't read or spell her name until she was about 7. She was behind all her other peers all through school and needed extra support for everything.

    We were given an appointment with CAMHS but i have to say they were useless and really didn't help at all. We went to several different appointments but never got anywhere with that. They said that there wasn't enough of "traits" to start an assessment for Autism and that was the end of that.

    I continued my fight and the school always said she was just a very shy girl who liked her own company. Her maths ability was always and still is way behind her peers and she has the ability of a 6 year old and she's 19 now.

    Anyway, when she was 16 we moved house to a different part of the country and from the time onwards things started to move. She started college and it was there that they referred her for the ASD assessment. Part of the process for this for us was i as her mum had to attend appointments where i had to answer questions going as far back as when she was a young baby, moving slowly to the present day (at the time) we we asked questions like "age when she walked, talked, would she play with others or on her own, did she ask questions, did she interact with others and so on. Two appointments which last 1.5 hours for each one.

    They then visited the college a few time for a visual test to watch her during break, to see what she did, who she was with and who she interacted with. Then the next visit was during a lesson, for much the same reason as the previous visit but in a different surrounding.

    Lastly she had an appointment where they asked her questions, visual things too, they showed her pictures and asked her to describe what she seen in the picture. Then they gave her some props and ask her to tell a story with them and to imagine the "peg" was a person. I will always remember this one because when she came home her reaction to me was "how could i imagine that was a man, when it was a peg"

    The whole process for my daughter took 3-4 months. We finally had the diagnosis during a visit at home from  the Consultant and of course it came as no surprise to us that she did indeed have ASD.

    As for support after this, then there really wasn't anything as such. We were given leaflets for Autism and i was asked if i wanted to attend any support groups but i declined that. Having lived with her all that time it came as no surprise that she did have it and i felt i didn't need to understand anymore than i already did.

    Support for young children with ASD is very limited, at least that's what i was told at the time.

    Whether you want to ask for a 2nd opinion is your decision.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • Adrian_ScopeAdrian_Scope Administrator Posts: 5,573 Scope community team
    Hi @Udosdottir
    It's unusual for them to base a diagnosis on just a school report. Could it be that they had other information from your daughter's other specialists? Did you receive a diagnostic report?

    Both my daughter's are currently going through the assessment process (one is further along than the other!) but in both cases we were initially referred to the community paediatrician who then wrote to the school and requested a report from them to determine whether to meet us at all. The community paediatrician then met with us and discussed our thoughts and the reports from the school and her other specialists and decided whether or not they felt it was worth pursuing an ADOS assessment. 

    Autism.org.uk has the following information about what this usually involves: 

    Your child should have a multi-disciplinary diagnostic assessment – that is, an assessment by a team of professionals. The team might include, for example, a paediatrician, a speech and language therapist and a specialist psychologist.

    In a multi-disciplinary team, the professionals are likely to assess your child separately and their findings are then brought together by the team leader to inform the diagnosis. This may mean you need to go for several appointments and it may be some time between appointments.

    Different diagnosticians use different methods to diagnose autism, but there are guidelines that they should follow:

    The National Autism Plan for Children (NAPC) says how a multi-disciplinary assessment should be carried out. It should include:

    • reports from all settings (eg school, nursery)
    • an autism-specific developmental and family history
    • observations in more than one setting
    • cognitive, communication, behaviour and mental health assessments
    • an assessment of the needs and strengths of all family members
    • a full physical examination
    • tests and assessments for other conditions where appropriate.

    The team should explain to you the reason for each test or assessment. You should be given plenty of time to ask questions. Don’t be afraid to ask for explanations or clarification if you need them.

    Senior Community Partner
    Scope
  • UdosdottirUdosdottir Member Posts: 17 Connected
    edited February 12
    @Adrian_Scope That's what we were told the process would be before they send out the letter to school. She now said that from that letter, she'd just be "happy to add autism to her diagnosises" if we wished. - We didn't discuss any answers school gave. To the contrary, she indicated that was not for me to know. And apparently that's the end of it.
    All she said was, that the mismatch in her obvious intelligence (she is exceeding expectations in mathe and english) and her difficulties socially would be enough for an autism diagnosis. The fact that she has no problem whatsoever with change in routine, and all the doubts we had before apparently just don't really matter.

    All in all I had the overwhelming impression the paediatrician was just not interested, as she stressed several times, that it was up to me whether she'd add it to the list of dignosises, and it wouldn't make any difference anyway, as she already has quite a list put together there, and thus is wouldn't change anything when it comes to her support in school and all that.

    For my son we requested an assessment, too, but the questionaire is still in school...

    It all sounds like we should insist on a proper assessment. Where should we go and who should we ask? This was the community paediatrician.
  • UdosdottirUdosdottir Member Posts: 17 Connected
    @poppy123456 Wow, it sounds like you have a tought journey behind you there. Thanks for sharing your story! All in all it sounds like you were let down pretty bad by your first community, but in the end you got a proper assessment. It sounds much more like what I would have expected. As far as I know, there was not a single test that they performed with my daughter. Mhm...
  • UdosdottirUdosdottir Member Posts: 17 Connected
    @firefly22 You must have your hands full with three grown children who still need help. How do you overall cope? And how did you get the assessment for all three of them? Was it ever decided for any of them without any tests?
  • poppy123456poppy123456 Community champion Posts: 18,398 Disability Gamechanger
    I have an ASD assessment report confirming her diagnosis that goes into a great detail about every part of the assessment. Did you have a report? If you didn't then yes, i'd certainly question the diagnosis too. Good luck, what ever you decide to do.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • UdosdottirUdosdottir Member Posts: 17 Connected
    @poppy123456 we do not have anything in writing. But that's partially because we want CAHMS to look into her PTS - they already indicated that if she has autism then they don't feel they are responsible because: being anxious and sensitive to certain noises is part of being autistic and there's nothing they could do about it.
    The paediatrician agrees that she needs mental health attention, and therefore said she doesn't want to give us something in writing at this point. But once CAHMS has come through "I can add it any time, just call our secretary". She never mentioned what that would mean. - I am more confused then ever now.
  • Firefly123Firefly123 Member Posts: 440 Pioneering
    No none of mine were diagnosed without going through the the pathway. First saw a specialist who did assessments on my daughter then referred her to the autism specialists she seen two and got lots of assessments. The one that totally confused her was a story about flying frogs and well frogs can't fly.. Then I gave information about her birth ect she was 3 months prem ect seems her primary school had lots of notes about her showing autistic traits didn't mention this to me I might add then her school filled in the forms ect then they went through them all and gave her a diagnosis. It is hard work at times with the 3 of them but we have our routine and we manage.
    Oh and yes I got a full autism report and how she scored or didn't on the tests. I would want it in writing.
    Good luck x
  • UdosdottirUdosdottir Member Posts: 17 Connected
    Thanks everyone! I didn't want to be the Mum who doesn't accept the paediatrician's diagnosis. But I now definitely feel justified to have some more questions for her, and will try to get my daughter into a proper assessment.
  • Richard_ScopeRichard_Scope Administrator Posts: 1,895 Scope community team
    edited February 13
    Hi @Udosdottir
    I would suggest that pursuing a definitive autism diagnosis via a proper assessment is the way forward and I would definitely request the assessment scores in writing.

    Roughly 7% of children with cerebral palsy also have autism spectrum disorder.

    These 2 disorders are not related to one another but commonly co-occur and affect childhood development.



    Scope
    Specialist Information Officer - Cerebral Palsy
  • anistyanisty Member Posts: 155 Pioneering
    HI @Udosdottir, I only just saw this thread. I am in Scotland where things might be a little different. Here, only a clinical psychiatrist can make an official diagnosis of Autism.

    My son is now 21. From birth, it was obvious within days that something was wrong but it took a long time to find out what as he was just incredibly passive, low toned (bit floppy with weak muscles) very slow hitting all developmental milestones but he had a lovely smile, great eye contact, pointed at things and grunted. He was trying to engage.

    There were so many professionals involved, but autism just wasnt a thought in his early years as it seemed to be a global learning difficulty.

    He has a pre school home visitor as he had no play development whatsoever. 


    Then, he flummoxed us all by teaching himself to read!!  He wasnt even talking until well into his third year and we deferred his school entry (easy to do in scotland) so he wasnt due to start primary one until he was 6yrs.

    But he learned to read by 5.5yrs. In a very unusual and autistic way it has to be said. He loved the tv and was only really ever doing something when watching tv. And he liked to watch the same thing over and over. He used to have the subtitles on and then back and forward over the same bit of tape over and over for hours.

    And i think he must have been matching words to text. This was early 2000's before internet so he also took to a range of books called 'leap pads' 

    It was an electronic book which came with a special pen. When you pointed the pen at words, the book said the words aloud.

    He spent hours on those books. And i cant think of anything at all else that helped him learn to read but he could read anything very fluently.

    But he didnt understand a great deal of it! Hyperlexic.

    Anyway, to cut a very long story short he continued to have huge difficulties with comprehension, play development and everything really.

    But he never presented behaviour problems at school. That was a problem. Because he sat and was very passive and had this ability to remember things and repeat them back, it was a very hard job to get teachers to realize the extent of his struggle. He used to come home and roll around on the carpet at about 9yrs old after a school day looking 'normal'

    Medical professionals could see his problems, that wasnt an issue at all. But school just couldnt grasp it at all.

    The final straw for me was when he passed his level C maths test at school. He was 9yrs old and that was the same level as all the able children. All his school support was pulled.

    I went into a meeting at the school and patiently listened whilst they told me he was a fantastic reader, well above average. Maths no problem etc etc.

    Little did they know, i had prepared well for that meeting. They told me the educational psychologist wouldnt attend. I called him and got him there. I got his speech therapist in too.

    I had a massive lever arch file and i do remember the teacher stuttering over her words when i asked her if she had noticed he doesnt understand what he is reading. I dont think she had!

    The slt confirmed his language comprehension was 4 years behind his chronological age level. The ed psych confirmed a few things too.

    And when we turned to his maths test and told them he had no concept of 'half' i think the penny dropped with them.

    You could ask him half of 8. He would say 4. Half of 12 6 and so on. He had memorised it. Cut a cake in half. No clue.

    He was literally spitting back the answers he had been told. They must have been teaching to test. This was at a time the scottish givernment had launched their new curriculum.

    From there, he was put forward for thorough cognituve and autism assessments.

    A four year waiting list.

    Finally, at 13 he had an ADOS assessment (autism) A full team did his assessment


    Clinical psychiatrist

    Speech therapist specialised in autusm

    Specialist nurse

    It was a team dedicated and specialised in autism. The nurse came and observed our son at home and school. Far from him having no probs at school, she observed many.

    There were questionnaires for home and school. The slt also came to our home.

    Our son did the formal assessment,

    Finally, when all observations and assessments were complete, we were invited to a meeting headed by the clinical psychiatrist.

    We got a very detailed report saying in heavy type that our son does meet the criteria for a diagnosis of ASD.

    The cognitive assessment was seperate and not a usual part of the autism assessment. It was done specially to help his high schol realise he was not 'very bright' and needed support.

    He was found to have IQ 85. Low average across the board with specific difficulties with processing speed and task initiation.

    Iq tests are out of favour these days because they arent always a good indicator of what a person can do. With hard work, people can do really well with an iq of 85.

    But for us, it confirmed that our son is not hiding any hidden genius and this reading ability is a quirk of his autism really.

    The diagnosis opened doors for us and him. We are so very lucky to have a wonderful centre set up by the parent of an autustic child. It does parent training, loads of activities for asd children. It started small years ago. Now 200 kids registered and has paid staff. Thanks to that place, our son thrived. Mainstream school kids never were his peer group.

    He feels happy and comfortable with other asd people.

    He tried college but couldnt manage. Now he does supported voluntary work and is at a very happy and settled point in his life.


    I asked him what change he would get from £1 if he spent 75p in a shop when i was filling in his pip form.

    " A ten and a five" he said "do you know how i do that, mum? I can picture the coins in my head. It's easy!"

    I said "that's great, but do you think that is the right answer?"

    We both laughed when i told him it wasnt!


    So much for passing school maths tests!!!


    So there is my son's story. A proper label for autism is placed by a clinical psychiatrist in Scotland. I do hope you get a good outcome for your daughter. Having a correct diagnosis really opens doors and is a great lever to accessing support in schools
  • anistyanisty Member Posts: 155 Pioneering
    Ps i started the ball rolling after that school meeting by going to my son's GP and saying I wanted him referred. His own slt didnt think it was worth referring due to the 4 yr wait time.

    He was 9 then so i really did feel it was worth it as we would know for definite for high school. It still wasnt clear cut that our son had asd at 9yr as he does have these additional learning difficulties plus he has always had the great eye contact, nodding and smiling. 

    But i wanted it ruled in or out.

    So the gp might be a good start point for you. Be clear about what you are asking for. Know what the pathway is in your area and then ask directly for that. Good luck!
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