initial meeting for assessment did not go well!

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xiaoqi
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30 Jul 2014, 2:50 am

This is a bit long, sorry, but I could really do with some advice/help/general suggestions!

First let me tell you a bit about my son J.

He is 6.5 years old, and is quite a bright child. From birth he has had issues with fabrics, and would only settle if completely swaddled in fleece. To this day he still will go to bed with something fleecy or he can't settle. Food-wise, he was on complete puree until about 18 months old, he just couldn't cope with anything with texture, it would cause major meltdowns, vomiting, all sorts! With much perseverance and support he will now eat most things, but still often gets a mouthful which he just can't deal with and some foods are a definite no-go. Socially, he has never mixed well with his peers, he has never had friends. He has, however, obsessed about one child for a period of a year or so at a time and been unable to understand when that child doesn't reciprocate, or wants to play with other children as well/instead. He wants to play his own choice of game, to the exclusion of all else, and doesn't want to join in with the games that the other children play.

He will often start a conversation in the middle, as if he expects you to understand exactly what he is talking about. When we ask him for clarification or ask a question about it, he will either go silent or will say something equally cryptic, such as 'well that's why I told them that', rather than answering the question. He is also unsure of what levels of affection to show to people, and in what situations it is appropriate. He will say 'i love you' many times a day, and will also be trying to touch/stroke/kiss adults (parents, family and friends) when walking through town, or at mealtimes etc. He doesn't maintain eye contact during conversations. When he is in trouble, he will smile or smirk, as if unsure how to respond.

He stims a LOT. He constantly claps, or taps his fingers together. If he is sitting down, his legs will be swinging to and fro. He also licks his lips and sticks his tongue out almost all the time. He has one interest - dinosaurs, and nothing else will do. All he wants to do is read about them, play games that revolve around them (dinosaur top trumps is a current fave) or watch television programs about them, and collect toys/models of them. He can read and pronounce all their complicated names, and can also name pretty much every one on sight, as well as tell you facts about them. Because he only ever wants to play dinosaurs, this is another reason why he doesn't really have friends, as he doesn't want to join in with their games, only play dinosaurs.

His reading is very good for his age (scores top marks on all reading tests the school have given him), however he really struggles at writing. He cannot punctuate at all, his writing is all one long string, with no spaces between and no punctuation. His maths is also quite good. His teachers say that he is very good with factual work (such as writing instructions for example), but that work which requires imagination, such as writing fairy stories etc, is something which seems to be beyond him, certainly at the moment.

J loves rules and routines, he likes to do things the right way round, reminds the rest of us if we forget something, or do something the wrong way round etc, and we've found that keeping things in a strong daily routine works well at helping him to function. He likes things to happen in the way he expects them to, and struggles when things don't go to plan. School routine was disrupted recently for rehearsals for the school concert, and he very much struggled with this, he acted out in class, couldn't deal with the change of expectations, including standing still practicing the songs with the whole school, the increased number of people and noise was hard for him too. He does cope reasonably well on holidays or when a change is anticipated, as long as certain smaller routines stay the same.

He has embraced Chess (he likes the rules!) and can now beat the computer on the lower levels. He is very literal and doesn't understand jokes. He will try to copy joke forms, but always with disastrous outcomes (why did the chicken cross the road? because there was a factory and some ice cream and it was raining). He also doesn't understand sayings such as 'take it with a pinch of salt' or 'break a leg' etc, he takes them literally and asks why we need to do that.

When we are out and about, I have to pay more attention to J, and hold his hand far more than I do my youngest, E, who has only just turned 4. This is because J seems to be in his own world, and can easily get distracted, wander off, get lost etc. He is completely oblivious to other people, cars, roads etc and so it is quite a task to keep him safe and stop him bumping into people or walking in front of them. He is also prone to meltdowns when out and about as he struggles with the amount of stimulation.

Recently his meltdowns have been quite depressive and self-berrating. He will talk about how stupid he is, how he is an idiot, how he can't control himself, how he is bad/naughty etc.

I think that's a reasonable background as to what life is like with J... so we finally managed to get a referral from the GP to CAMHS (Children and adolescent mental health service, in the UK), after his last major depressive meltdown, at which point he said that he wanted to light a fire and burn to death. We went to see the lady on Monday, I took along a great list of all the issues we've had, all the things I've noticed etc, far more than I've put in this post, and she observed him with his siblings and talked to him. She saw that he was in his own world and it was hard to bring his attention back to her, and that he started conversations in the middle. He talked to her about dinosaurs, I explained about everything else...

Her response was that because he was able to play with his brother and sister, that he is a normal 6yr old. That they never diagnose at 6 years old, they always wait until at least 8, and that pretty much all of his behaviours can be explained by being 6. She did grudgingly give me the AS questionnaire to fill out for him and say that she would pass on our details, my notes, the questionnaire and her notes, to the paediatric neuro team, but said that she didn't think they would really do anything.

I am now at a complete loss as to what to do. Both his current school and his previous school (we moved in April) have been adamant that he is on the spectrum based on their observations of him in day-to-day life, yet this woman who is supposedly an expert is pooh-poohing everything that i've been told for the last year+ that i've been waiting for this assessment to come through.

I feel like I'm losing my mind - is all his behaviour normal for a 6yr old boy? Can any of you shed any light on whether based on my description of him you would be inclined to think he has AS, or whether me, and both schools, have been over-thinking things and he sounds normal? I really am utterly confused now and doubting my convictions, and I don't know whether I should be pushing this and asking for a second opinion and for the GP to refer directly to the paediatricians if this CAMHS lady doesn't, or whether I should be dropping it?

I only wanted this assessment because I'm desperate for some additional support for him both at home and in school, as I want to ensure that he's being helped in the best way to play to his strengths and overcome any weaknesses, and now she's got me thinking i'm just being a neurotic mother and seeing things that aren't there.

Please give me your opinions! They are all appreciated!!



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30 Jul 2014, 5:27 am

I think it's important whether she gave you another appointment. If she did, you can go in and focus on schools concerns. Perhaps she was having a bad day. If there is no follow up planned, has (or would) school written the GP about their concerns? That could help take the focus off this being you wondering if your child is normal.

An important thing to remember in meeting with people about your child is that many times, if you show too much emotion---not saying you did, but they are funny about it, can't show too much, and they treat me like I'm weird if I show too little---they make mom the problem. Made me doubt reality for quite awhile, I remember, and that was difficult.

This sounds awful, but I learned to keep the focus on "how we will help my child who is willing to make progress". Carefully including what I am doing to help. And always trying to maintain a positive attitude unless you want them to focus on reassuring you (and themselves) things will be ok, which can be valuable but not right now when you want some coherence.



xiaoqi
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30 Jul 2014, 6:35 am

Thanks for your reply.

She didn't give us another appointment. She said she would pass on all the info to the paediatricians and see whether they want to do anything, but she seemed to be saying that from her observations he is completely normal and so she would be telling them that in her handover. Thankfully my observations are in the info, as well as the AS questionnaire we filled out, so maybe they'll decide to see him anyway, but she made it sound like it was pretty doubtful. She said that diagnosis doesn't happen til at least age 8, so they would have to go out of their normal routine to meet with him now.

I guess I'll probably have to wait for the start of term and talk to the teachers and find out about going down the Educational Psychologist route, where they won't diagnose but they will at least offer support for his schooling...



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30 Jul 2014, 6:58 am

I'm sorry, yes. It's a long route.



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30 Jul 2014, 8:47 am

I'm so sorry. That is horrible. Unfortunately, I don't know what you would do for a next step in the UK. Is there any options other than CAMHS? She sounds absolutely behind the times.


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xiaoqi
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30 Jul 2014, 8:59 am

Thanks, I don't know what my next step is either, I guess I have to wait and see whether the info she sends to the paediatricians gets any more attention than she gave it. I still have a vain hope that they will want to look into it further rather than just dismiss...

She made out that because he could interact and play with his family, that was decisive and meant that he couldn't be aspie. I don't feel that is correct.

I guess I will have to wait and see whether I get an appointment letter or a discharge letter, and go from there, I just hate feeling like a neurotic paranoid mother, when everyone through both his schools has suspected that he has, and the SENCO of his current school urged me to push through the referral. :(



Odetta
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30 Jul 2014, 9:04 am

I PM'd you about a UK forum you might find helpful.



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30 Jul 2014, 10:02 am

xiaoqi wrote:
Thanks, I don't know what my next step is either, I guess I have to wait and see whether the info she sends to the paediatricians gets any more attention than she gave it. I still have a vain hope that they will want to look into it further rather than just dismiss...

She made out that because he could interact and play with his family, that was decisive and meant that he couldn't be aspie. I don't feel that is correct.

I guess I will have to wait and see whether I get an appointment letter or a discharge letter, and go from there, I just hate feeling like a neurotic paranoid mother, when everyone through both his schools has suspected that he has, and the SENCO of his current school urged me to push through the referral. :(


I don't know anything about the U.K, but what she is telling you is bunk.

It is not at all untypical for kids on the spectrum to be able to acclimate to nuclear family level socialization. They learn the family member's rhythms (to a a point) and the family members do a lot of compensating both conscious and subconscious. My son looks and acts way less autistic when in his home environment. Having to deal with people he does not understand and who won't (or do not know how to) accommodate him is a whole other thing. Adults usually will humor him, but other kids? Natch. My son isn't even interested in trying at this point b/c it is so damn hard.

Anyway, being able to socialize with family members is a skill, certainly. It took us awhile to get there. It does not indicate a lack of autism or even growing beyond a need for diagnosis. Even if your child had one or even a few friends, outside the family, it would not mean not autistic.

I have a feeling they just don't like to diagnose what they consider milder cases too early for financial or whatever reasons, if it is indeed a stated policy, and not just this one person's preferences.



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30 Jul 2014, 11:13 am

I'm sorry to hear. When my son had a psychology test done, he never finished the test (He shut down early) which apparently is a very rare outcome. Even though she could diagnose herself, she decided to put him on the wait list for the ADOS test to do a formal diagnoses which we of course welcomed (He was 3 years old at that point but didn't get the test done until he was 4). Is that something she has to wait until he's 8 to refer him to?



xiaoqi
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30 Jul 2014, 12:21 pm

ASDMommyASDKid wrote:
I don't know anything about the U.K, but what she is telling you is bunk.

It is not at all untypical for kids on the spectrum to be able to acclimate to nuclear family level socialization. They learn the family member's rhythms (to a a point) and the family members do a lot of compensating both conscious and subconscious. My son looks and acts way less autistic when in his home environment. Having to deal with people he does not understand and who won't (or do not know how to) accommodate him is a whole other thing. Adults usually will humor him, but other kids? Natch. My son isn't even interested in trying at this point b/c it is so damn hard.

Anyway, being able to socialize with family members is a skill, certainly. It took us awhile to get there. It does not indicate a lack of autism or even growing beyond a need for diagnosis. Even if your child had one or even a few friends, outside the family, it would not mean not autistic.

I have a feeling they just don't like to diagnose what they consider milder cases too early for financial or whatever reasons, if it is indeed a stated policy, and not just this one person's preferences.


Thank you for clarifying that for me! I don't know whether it is the stated policy, she made out that it probably was but I haven't seen any documentation or anything about the department who would actually be doing the diagnosis to know what the facts are there. I know other kids in the UK who have been diagnosed earlier than 8, so if it is policy, it must be for our local area only, which is a bit of a pig!



xiaoqi
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30 Jul 2014, 12:23 pm

Gov wrote:
I'm sorry to hear. When my son had a psychology test done, he never finished the test (He shut down early) which apparently is a very rare outcome. Even though she could diagnose herself, she decided to put him on the wait list for the ADOS test to do a formal diagnoses which we of course welcomed (He was 3 years old at that point but didn't get the test done until he was 4). Is that something she has to wait until he's 8 to refer him to?


She didn't mention ever seeing him again, or how to get any further information, she just said 'he's normal' and basically shooed us out of her office... grudgingly giving me the questionnaire to fill in on the way out and to hand back in at reception. It was really deflating and I have no idea what happens now.



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30 Jul 2014, 12:56 pm

You used two terms there, so I'm not sure if you were trying to get him evaluated for depression (and he already has an ASD diagnosis) or ASD.

If you were seeking an eval for ASD, then it is completely appropriate to give an eval after age 3 (and people are developing earlier diagnoses) . It is also appropriate to complete at least a screening assessment. The definition of ASD allows for a variety of distinct deficits, and "able to play with siblings" is not a rule-out. Since you're in the UK, they may be using the ICD-10 diagnostic criteria for autism (and related disorders), which is slightly different than the DSM diagnoses (the standard in the US): http://www.who.int/classifications/icd/en/GRNBOOK.pdf
Note that if your child only has some of the symptoms for autism, they still may meet criteria for one of the related disorders (Asperger's or PDD-NOS).

If you were seeking an eval for depression, then it is not commonly diagnosed in younger children (although the whole phenomenon is still not well understood - research is ongoing). I do understand the concern over some of the things your child said, and I would definitely seek some treatment - if only to see what is motivating him to say those things and try to change that.

I would also pay attention to possible conflicts of interest for the person giving you the evaluation. Are they employees of a school, who may have to pay for your child's treatment? I'm not sure how those sorts of things work in the UK, but in the US, there are occasionally perverse incentives that can cause teachers, school administrators and health professionals to misrepresent or minimize problems. It doesn't happen everywhere, or all the time. Even when some of those incentives are present, people can be motivated by the well-being of the client, but it is something to be aware of, especially if you feel like you are not being listened to. In such scenarios, a second opinion may be in order (even if it costs you some money).

I've also worked with families where a child had an ASD diagnosis that was completely undeserved. Apparently the child was just shy with the doctor, but because the sibling had Down's Syndrome, the doctor interpreted it as autism and gave the child that diagnosis - with me they presented as highly social and completely neurotypical. There are people who are ideologically opposed to the overdiagnosis of certain disorders (ASD and ADHD) and may err on the side of dismissing the diagnoses, even when confronted with real symptoms.
Good luck!



xiaoqi
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30 Jul 2014, 1:41 pm

EmileMulder wrote:
You used two terms there, so I'm not sure if you were trying to get him evaluated for depression (and he already has an ASD diagnosis) or ASD.

If you were seeking an eval for ASD, then it is completely appropriate to give an eval after age 3 (and people are developing earlier diagnoses) . It is also appropriate to complete at least a screening assessment. The definition of ASD allows for a variety of distinct deficits, and "able to play with siblings" is not a rule-out. Since you're in the UK, they may be using the ICD-10 diagnostic criteria for autism (and related disorders), which is slightly different than the DSM diagnoses (the standard in the US): http://www.who.int/classifications/icd/en/GRNBOOK.pdf
Note that if your child only has some of the symptoms for autism, they still may meet criteria for one of the related disorders (Asperger's or PDD-NOS).

If you were seeking an eval for depression, then it is not commonly diagnosed in younger children (although the whole phenomenon is still not well understood - research is ongoing). I do understand the concern over some of the things your child said, and I would definitely seek some treatment - if only to see what is motivating him to say those things and try to change that.

I would also pay attention to possible conflicts of interest for the person giving you the evaluation. Are they employees of a school, who may have to pay for your child's treatment? I'm not sure how those sorts of things work in the UK, but in the US, there are occasionally perverse incentives that can cause teachers, school administrators and health professionals to misrepresent or minimize problems. It doesn't happen everywhere, or all the time. Even when some of those incentives are present, people can be motivated by the well-being of the client, but it is something to be aware of, especially if you feel like you are not being listened to. In such scenarios, a second opinion may be in order (even if it costs you some money).

I've also worked with families where a child had an ASD diagnosis that was completely undeserved. Apparently the child was just shy with the doctor, but because the sibling had Down's Syndrome, the doctor interpreted it as autism and gave the child that diagnosis - with me they presented as highly social and completely neurotypical. There are people who are ideologically opposed to the overdiagnosis of certain disorders (ASD and ADHD) and may err on the side of dismissing the diagnoses, even when confronted with real symptoms.
Good luck!


Thank you, I was looking for an ASD diagnosis as the depressive bits only tend to happen as part of meltdowns. Their presence had just meant that things were brought forward a little as the waiting list for non-urgent referrals is quite long. There shouldn't be any conflict of interest as far as financials go - the nhs pays for all these healthcare things, which takes a lot of that budgeting stress out. I am hoping that we will get the chance for a second opinion, maybe without his siblings present this time (I'd hoped I could leave them watching a video in the waiting room but it was far too busy this time) I'll have a look at the diagnostic criteria you've mentioned and see how he fits. Thanks!



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30 Jul 2014, 4:06 pm

Glad to hear that it's publicly funded, it may just be that the psychologist is tired of over-concerned parents interpreting everything as autism - and so they dismiss it, even when it may be appropriate to think about more clearly. The screener should definitely help with this. If the screener is positive, they should refer him for further testing - keep in mind that screeners set a low bar, so they don't accidentally screen people out. So he could seem positive on the screener, then after more testing it could be ruled out.

The age 8 thing is absolutely incorrect for ASD. The gold standard treatment for autism is called early intensive behavioral intervention. I know of school programs in the states that offer excellent EIBI and then they stop at age 6. The earlier the diagnosis, the better. That all applies to "autistic disorder" or "low functioning" autism. Basically whenever there are communicative deficits, it becomes very important to start teaching language as early as possible. There are cases of "higher functioning" ASD, where there are few or no communicative deficits and the social deficits are much less severe. In these cases, they may not be diagnosed until the child is older, because the child is able to compensate for those social deficits at a young age. People may not notice it until the social environment becomes more difficult and complex with age, at which point the child gets diagnosed. That may be what the psychologist was referring to. In either case, once the deficits start impairing functioning, it's an appropriate time to take action. It is not a good idea to just wait and watch for years, while a child struggles and fails in school, and relationships.

When reading about this stuff, keep in mind that the criteria that psychologists use for all of the diagnoses and most symptoms is "causes significant impairment or distress." It's easy when looking at disorders to diagnose everyone around you, but its the combination of the symptoms and real impairment (e.g., difficulty making friends) that elevates something to the level of "disorder." I know those are subjective terms, but it's important not to go overboard when looking at what might be wrong with yourself or a loved one. There are plenty of people, who aren't good with eye contact, for example. That doesn't mean they all have ASD.



xiaoqi
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30 Jul 2014, 5:17 pm

Thank you, I agree completely, and if it were just a few minor things then I wouldn't be concerned, but it is causing him quite a bit of distress - he has meltdowns quite a lot, especially when we're out shopping etc, I think there's something about the noise or light in certain shops that triggers it as he can be happy as anything going into certain ones, but completely loses it after we've been in there for only about 5mins. He says he doesn't know why, that he just feels really grumpy and sad and that the noise isn't right, and that he doesn't feel he can calm down again until he gets home. I know that he is having problems with things in class as well and sometimes hides under the tables, and he really can't make any friends - the only ones that play with him at break time are his siblings!

I had so hoped that getting a diagnosis would be straight forward and simple, and that the people we saw would be 'oh, i see what you mean, we'll get him some help'. It was flabbergasting to be told that there is absolutely nothing wrong with him, that the meltdowns are a developmental thing that happens at age 6, like the terrible 2s, and to completely blank the stimming etc etc. I didn't feel we were taken seriously at all. I tried saying how different he was to my other two kids, and was told 'but all kids are different, and girls are more advanced anyway.' Everything I said she either ignored or told me was completely normal behaviour, it was really demoralising.

I really hope that the paediatricians agree to see us, otherwise I honestly don't know how I'm going to manage to support him.



zette
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30 Jul 2014, 5:58 pm

She sounds like a gatekeeper. Even though the NHS is publicly funded, someone is trying to keep a lid on costs by excluding therapy for kids like your son.

Is there any sort of autism society in the UK, where you could find other parents who have been through the system and can give you advice about how it works? You definitely want to keep pushing until you get some testing that includes the ADOS (autism diagnostic observation schedule), and help from a behavioral therapist. Don't wait for the system to get back to you, figure out what you can do to keep moving things along. Written documentation of the school's concerns can only help, so definitely pursue the school supports in parallel.