Some advice on our undiagnosed 4 year old please

[JCB]

Our child is nearly 4 years old (undiagnosed) and attends mainstream nursery 2.5 days a week. He has always had 'odd' behaviours and we initially thought he had SPD. After taking him to see a clueless GP, we were sent to a registrar who had never heard of it and we were dismissed. He still displays loads of SPD behaviours.

 

He has had lots of medical problems that are unrelated.

 

His behaviour is beginning to affect his siblings and affect him at nursery school and we have been looking at the symptoms of Autism or more specifically, Aspergers. To be honest, we really don't have a clue but my hubby called a national support group up and explained our situation - they agreed it sounds like autistic tendencies but we would like to get more opinions before braving our GP who thinks we are neurotic (something I expect most of you will be familiar with).

 

I know strangers cannot diagnose our child but we would be EXTREMELY grateful of your opinions regardless.

 

Here is a list of 'traits' we have been compiling, there are lots more and we add to it each day:

 

 

refuses to talk to anybody but me

it's not big - it's large - always uses 'different' words to that of his siblings

very angry if we don't go down stairs in size order, or an order he decides

won't wear pajamas unless they match in colour

very angry if tv show is turned off before end credits

has own set ways, very angry if we try to change anything

will not wet head - bath time torture for all involved

regressing with development - wearing nappies again after months of not

will not dress himself - used to though

often doesn't listen - conversation is one sided - keeps talking about own subject

his own toys have set places - very angry and cries if not put back correctly

sometimes flips between happy and sad in heartbeat - usually happy to sad

when angry, tantrums can go on for hours and nobody but me can talk to him

pretends he can't hear you, even if you are right next to him

started to say ''what'' very often, even after repeating 5 or 6 times next to his ear

inappropriate eye contact - usally doesn't make much but sometimes stares continuously and 'freaks people out'

plays much better alone - can't leave unattended with younger brother and sister as can get violent

will NEVER wear coat/ cardigan unless fastened correctly to the top inc. buttons and zip

very active - runs in circles for an hour or more then will suddenly become sleepy and extremely grumpy

becomes fixated with tiny cuts - won't get them wet at all constantly talks about them

doesn't appear to feel pain or discomfort but will fly off handle at something he expects should hurt - ie play fighting with siblings

can ask a question 10 different ways - eg. whose is that biscuit, who does it belong to, who owns it, who is going to eat it, etc etc.

has to use correct entrance in school - will not use inside door to nursery when I am volunteering in a different class, must walk to the outside entrance

if something is not done his way, he will go back to the beginning eg. if he i putting a toy away and his sister does it, he will take it out of the box, put it back where it was and put it back in the box himself

corrects us often - we have to use a correct name for something or he gets angry - eg. his crocs are not shoes, but crocs and a cheesestring is not a snack, it's cheese

talks to himself when alone - usually asking himself questions, when interupted, is not embarassed

makes high pitched sounds for many minutes, sometimes over an hour eg. his ooo ooo ooo ooo ooo ooo noise is what he does to 'chase the clouds away' nobody can stop him

continually repeats himself until he is certain EVERYBODY has heard him

often refuses to eat what rest of family is eating even if it was his choice initially

inappropriate contact - does like cuddles with me but often holds on to a family member's legs and refuses to let go - has to be literally prised off - just zones out

asks for help to stop doing a certain behaviour eg. ''I can't stop kicking my sister, I need help to get my leg to stop''

Talks like he is much older but doesn't necessarily understand the words - uses words in their literal sense

Does things he likes over and over again - plays on computer on educational games for hours if left alone - often clicks on the same sequence and watches it numerous times

Now refuses to join me in assembly after nursery on Friday - we have done this for months - shouts out and doesn't allow other children to pass him to collect awards etc. just sits in the way even though 200 pairs of eyes are on him

Regularly wakes at night, usually before midnight. Comes downstairs frequently for no valid reason

Issues at school also - eg. his teacher noticed his coat was inside out so she started to fix it for him. He went spare and said he wanted it that way. A massive tantrum ensued and he forcefully took it from her. He then proceeded to turn it back the way it was. It took about an hour to calm him down

Won't eat food if it is not 'whole' eg. if a biscuit is broken in half, he won't eat it, even if you give him both halves. It must be complete and undamaged. Will do the same with all foods

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I wrote some more down in the car yesterday so I will add these when I go and grab it.

 

Thanks so much in advance,

 

JCB

[Sally44]

Why haven't the nursery/school referred him?

If they have concerns they can and should refer to speech therapist and educational psychologist. Ask nursery/school to refer him. The SALT is NHS and should be able to refer him onto whatever NHS professionals usually see and diagnose children as being on the spectrum.

 

His speech presentation sounds like it could be a speech disorder typical of autistic spectrum condition. Children diagnosed with Aspergers have to have typical language development at least up to age 3. He is showing alot of difficulties understanding language ie. asking the same questions in various ways until he fully understands. My son is the same eg. once he was going to Cubs, and they had asked all the children to bring a torch. He asked questions like "why do we need a torch" "will it be dark" "will everyone have a torch" "will all the torches be the same" "what will we do with the torch" "are we staying all night" "are we going camping" etc on and on and on until he was satisfied that he need a torch just for that one session that would finish at the normal time and that he would be coming home afterwards etc.

 

Google echolalia for his repeating words/phrases. That highlights a speech disorder.

 

He probably isn't pretending to be deaf, most children on the spectrum, when focused, become deaf to their surroundings. Sometimes my son needs to be touched before he snaps out of whatever he is doing [and that usually causes a tantrum because he has had to disengage from what he was focused on, and that makes him lose his place within the process of what he was doing, and that means he has to start from the beginning all over again], and is able to hear what I say.

 

These are sensory processing and integration issues.

 

He also has very rigid behaviours and routines and things have to be done in a very particular way.

 

He may also have executive function problems - you can google that too.

 

If you see your GP ask him to refer you to the multi disciplinary team that diagnoses children on the autistic spectrum. There will be someone. In our area the SALT refers to the communication clinic at our local childrens hospital where the clinical psychologist, OT and Developmental Paediatrician see and diagnose children.

[Sally44]

www.schoolbehavior.com is an american website I found very informative because it talks about a number of conditions that are often present in children with autistic spectrum condition. That might help you understand things more?? But he really does need to be seen, assessed and observed because I am sure you know that these difficulties are going to make school a very difficult time for him. He may need a specific autism unit, or a high level of support and therapy input during his primary years.

 

Another link is http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4090571.pdf

 

The above is a government document which details the process of a child being diagnosed. Might be useful to have that with you when you go to the GP, or ask to see a different GP to the one that fobbed you off. Don't take no for an answer. You are the parent of other children, you know that somethings are not right and have concerns, and those should be investigated.

 

You should take your child with you to the GP, and if you think there is anything you could do or say to your son which would demonstrate to the GP some of the issues you are having, then take them with you and let the GP see for themselves.

Edited October 25, 2011 by Sally44

[JCB]

Thank you, I really really appreciate the advice, the Cubs thing you mentioned made me laugh out loud because it sounds so much like my child! I think sometimes it feels like a relief when I see something that is so much like him because I know I'm not going mad!

 

I googled those terms and it does sound very much like my child.

 

The websites are great too, I have had a quick look and will continue to pore over the info today.

 

We have an appointment with a GP in a couple of weeks - we had to hold out a month to see a particular one! We are going to take our list and our son with us although I expect he won't even go in the door when he realises the appt. is for him.

 

We are also going to 'officially' broach the subject with the nursery after the half term. We have been mentioning things to them for a while and they kind of seemed receptive of the idea but they are the sort to shrug things off if it means more work. The school SENCO is also the nursery manager and she hates us. That doesn't help. The problem is is that until we started saying how difficult our son was at home, they never mentioned a word of his odd behavior at school!

 

Thanks again, Jen

[trekster]

Welcome to the list and good luck with trying to get a diagnosis for your son.

[JCB]

Here are some more of his mannerisms:

 

Won't eat food if it is not 'whole' eg. if a biscuit is broken in half, he won't eat it, even if you give him both halves. It must be complete and undamaged - will not eat bananas unless they are perfect, can't cut the 'bad' bit out, must be whole - won't eat apples without the stalk on the top - says they are bad if stalk is missing

 

struggles to use toys in their correct way - e.g. will use a car as a rocket or a camera as a toy gun

 

gets angry when things are moved that are his - eg. questioned the whole household this morning as to who had moved his cup from the position he had left it in next to his plate - he had moved it himself but not realised - he was rather cross

 

example of his speech - in the car last night, I wrote it down word for word as he was saying it - ''Mummy, I like to look at strawberries'' - (''Yes they are red C, maybe we could go and pick them in the summer?'') ''Well I like to look at the…Daddy are they called seeds or nuts?'' (''Seeds C'') ''They have seeds on the outside that are bumpy and I like them…well if we have a plant and it is growing and it's getting bigger and erm, there are round things on them that are growing and they are round like a hill and with a stalk coming from the top, well if it is still growing, then we could pick some off'' - he talks like this all the time, like he is missing the point of the conversation i.e. focussing on the smaller details

 

Often forgets what he is saying mid sentence - might say mummy 5 or 6 times before he has got halfway through his sentence i.e. Mummy, well, mummy, pause.....mummy can I have, mummy....well mummy.....

 

 

[Kathryn]

Thats a comprehensive list. When you go to your GP it might be a good idea to arrange for one of you to take your son out after the first five minutes: it's not easy to talk about your child while they are sitting there!

 

Unfortunately as a parent you do often have to persist until people listen, and you may be in it for the long haul.Regarding the nursery, asking for their SEN policy in advance may give you confidence as it will tell you what they should be providing and guide you in what you can ask for. Also take a look at the SEN Code of Practice chapter 4 which is all about Identification, Assessment and Provision in Early Years settings.

 

http://media.education.gov.uk/assets/files/pdf/s/sen%20code%20of%20practice.pdf

 

Although it all looks neater on paper than it often works out in practice, just knowing the legal duties of education and health providers regarding your son means you are less likely to be fobbed off when you ask for things to be done.

 

Good luck!

 

K x

Edited October 25, 2011 by Kathryn

[JCB]

Thank you for the welcome

 

and thank you Kathryn, that is very good advice, I will do that

 

Jen x

[jb1964]

Why haven't the nursery/school referred him?

If they have concerns they can and should refer to speech therapist and educational psychologist. Ask nursery/school to refer him. The SALT is NHS and should be able to refer him onto whatever NHS professionals usually see and diagnose children as being on the spectrum.

 

Hi JCB - as Sally says I think the nursery will pick up on this and will suggest getting him assessed as they will want direction especially if he's in mainstream.

 

Here are some more of his mannerisms:

 

Won't eat food if it is not 'whole' eg. if a biscuit is broken in half, he won't eat it, even if you give him both halves. It must be complete and undamaged - will not eat bananas unless they are perfect, can't cut the 'bad' bit out, must be whole - won't eat apples without the stalk on the top - says they are bad if stalk is missing

 

struggles to use toys in their correct way - e.g. will use a car as a rocket or a camera as a toy gun

 

gets angry when things are moved that are his - eg. questioned the whole household this morning as to who had moved his cup from the position he had left it in next to his plate - he had moved it himself but not realised - he was rather cross

 

example of his speech - in the car last night, I wrote it down word for word as he was saying it - ''Mummy, I like to look at strawberries'' - (''Yes they are red C, maybe we could go and pick them in the summer?'') ''Well I like to look at the…Daddy are they called seeds or nuts?'' (''Seeds C'') ''They have seeds on the outside that are bumpy and I like them…well if we have a plant and it is growing and it's getting bigger and erm, there are round things on them that are growing and they are round like a hill and with a stalk coming from the top, well if it is still growing, then we could pick some off'' - he talks like this all the time, like he is missing the point of the conversation i.e. focussing on the smaller details

 

Often forgets what he is saying mid sentence - might say mummy 5 or 6 times before he has got halfway through his sentence i.e. Mummy, well, mummy, pause.....mummy can I have, mummy....well mummy.....

 

As he's only 3yrs old and they can say/do 'odd things' and get upset etc - it's difficult really to comment on this.

 

Hope you get some help from the nursery/gp soon.

 

Take care,

Jb x

[Lyndalou]

Here are some more of his mannerisms:

 

Won't eat food if it is not 'whole' eg. if a biscuit is broken in half, he won't eat it, even if you give him both halves. It must be complete and undamaged - will not eat bananas unless they are perfect, can't cut the 'bad' bit out, must be whole - won't eat apples without the stalk on the top - says they are bad if stalk is missing

 

struggles to use toys in their correct way - e.g. will use a car as a rocket or a camera as a toy gun

 

gets angry when things are moved that are his - eg. questioned the whole household this morning as to who had moved his cup from the position he had left it in next to his plate - he had moved it himself but not realised - he was rather cross

 

example of his speech - in the car last night, I wrote it down word for word as he was saying it - ''Mummy, I like to look at strawberries'' - (''Yes they are red C, maybe we could go and pick them in the summer?'') ''Well I like to look at the…Daddy are they called seeds or nuts?'' (''Seeds C'') ''They have seeds on the outside that are bumpy and I like them…well if we have a plant and it is growing and it's getting bigger and erm, there are round things on them that are growing and they are round like a hill and with a stalk coming from the top, well if it is still growing, then we could pick some off'' - he talks like this all the time, like he is missing the point of the conversation i.e. focussing on the smaller details

 

Often forgets what he is saying mid sentence - might say mummy 5 or 6 times before he has got halfway through his sentence i.e. Mummy, well, mummy, pause.....mummy can I have, mummy....well mummy.....

The biscuit and banana thing is quite familiar. My little boy doesn't like broken biscuits too much although if it's 'almost' whole he doesn't protest too much these days. Bananas, however are still put to the side of the plate if he notices there's a delve in them bigger than it 'should' be.

 

He also can be quite unhappy if something is moved, especially if he has been very focused on a particular activity for a period of time.

[Sally44]

I think a thorough assessment by a speech therapist who is experienced in both ASD and speech disorders will be very interesting.

Let us know how you get on at the GP, and also ask the nursery for refer him to SALT [with Code of Practice and Exemplar in hand!].

 

A child can be chatting all the time and still have a speech and language problem. It can be expressive or receptive or both. He may have 'meaning' blindness [hence playing with toys as he does, or this may demonstrate some imagination, which is good], and he may also have word meaning and word finding difficulties.

My son's speech can be very similar. Can talk for ages before you know what he is even asking or telling you. The SALT suggested a narrative framework, which was very useful.

 

Sometimes he tries to tell us something and just gives up because it is too difficult for him to put it into words.

 

Not understanding the main point of anything [can be visual, auditory etc] is what the professionals put down to lack of central cohesion. It means those with an ASD can often miss the main point and yet home in on something else. It means that the main point of language, and learning can be difficult or impossible for them to get. That spills over into demonstrating learning. If asked a question they may give a totally unrelated answer. If told to write or draw about something they may not be able to do it. Abilities vary greatly as each person is so different.

 

When you have been referred to SALT, find out the telephone number and speak to the SALT who will be coming. Ask her if she has experience of diagnosing speech disorders in general and also those associated with an ASD.

 

Ask her to carry out standardised assessments [i'm not sure if 3 is too young for this, but if not, ask that they are carried out when he is old enough].

 

Standardised assessments are useful because they assess all the skill groups and will give you an age related score or a percentile/standard score. This can be compared against 'typical' language development, and the scores can also be used to measure progress when they are carried out a year later. No professional automatically carries out standardised testing, often they don't complete the whole test, and often they don't add those scores into the final conclusions bit.

 

A child with a speech disorder can get very difficult results, especially if they are echolalic, and can rote learn quickly. My son's scores ranged from 1-15. Average is 8-13. So he scored above average, which the SALT later agreed was due to him rote learning and repeating verbatim the story she had told him. The score of '1', was for formulating sentences, and was only carried out earlier this year. A score of 3 is classed as a severe degree of difficulty, and it turned out that the "formulated sentences" part of the assessment directly relates to the child's ability to access learning and demonstrate learning. So that score proved beyond doubt that he was not mainstream material, although his non-verbal cognitive ability is just below, average, above average on most other skill sets.

 

You also need to ask the SALT to assess his social communication and his emotional literacy. Again at age 3 this may not yet be useful to do. But file that thought away for a few years time. He needs to be able to communicate socially to interact with others, and he needs to be able to communicate how he is feeling.

Edited October 26, 2011 by Sally44

[clairebear2k6]

i'm kinds tired after a long harrowing day with my own son who i am trying to get a diagnosis so i will be brief lol. it sounds like your concerns are valid. very very valid. go get some assessments and stand your ground too, cos nobody knows him better than you do, and much of his behaviour does sounds aspergersish. good luck x

[Haze]

Hi JCB

 

Reading your thread apart from the toliet issue our five just behaves the same way we have got diagnosis of asperger's but were we live it need's two to agree, Stupid i know. We struggled and still do but have learned if he want's blue pj's then that's fine, with food as long as he his eating then we live him to his own method no mixing texture is key just him keep to five a day fruit and veggies. Our little bashes his sibling just be understanding to him but let him know he hurt them and leave it. We learned fast keep talking for a long time he just toddle off. He does't read body cues well so we had to clearly and simple show him. Bedtime be firm we do and as long he stay's there and asleep try and make his room his space what i mean is my little one like dionsaurs and colour blue so we decorated and itemised all i his favourite thing's and keep it the same way no change with ANYTHING even car's in a line and teddies in a row and finally let people know he has own private space but reward him for allowing people in and sharing. My little one find his room a place of comfort when he's had a bad day or just want's me time. One good tip we can tell you one instruction at time again my son goes awol if there is to much information to process. Praise and praise discover his hobby you'll love how get's in grossed and gives you a lesson we know dino's back to front almost.

Edited November 26, 2011 by Tally
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