Un-diagnosed 4.5 year old

[JCB]

I posted on here a while ago asking for advice and got a lot of help (so thank you) We have since moved house into a new area with new doctors and new systems etc etc.

 

My son is 4.5 and is due to start nursery in September (I have withdrawn him as he did attend the nursery there and we're rubbish). We are on the waiting list for another school so it looks like he will not start this September after all as all the schools are full. (BD10 - Bradford). There is an autistic school opening this September but they need a full diagnosis first.

 

He displays a lot of worrying behaviours that we as parents are really struggling with. Having worked with autistic kids, I am almost certain he is autistic. Our HV actually agrees (wow we seem to have stumbled across a half decent one!) her and the GP have referred our son to the local paed to be 'assessed' we have been told there is a 9 month waiting list for this appt. Great. She has also referred him for a hearing test which is pointless as he will not participate whatsoever. I'll take him just to show them.

 

Below is a list of his 'behaviours' we have been compiling for approx 9 months. Any views on them would be much appreciated.

 

I filled out the PDD autism screening questionnaire http://www.childbrain.com/pddassess.html and my son scored 168 which is classed as 'severe'.

 

My last question is a bit of a taboo one..... Has anybody got a private diagnosis that has been recognised by the NHS? I'm aware it needs to be a multi disciplinary diagnosis which we will happily pay for (to speed things up) but I don't want him to need two sets of 'tests' he won't cope with one!

 

My long long list...

 

Often refuses to talk to anybody but me (mum)

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 (also, it's not big, it's large etc.)

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 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, will not listen if you try to tell him otherwise.

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 Cal, 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 Cal'') ''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.....

has a favourite film that he will watch for weeks on end - at the moment it is Meet The Robinsons

loves games where he puts things inside another - eg. has a bucket he fills with toy cars and a toy house he fills with play food - his bedside cabinet must contain all his 'soft' books

Will not get into bed at night unless his toys are lined up on his headboard.

Will not get in to bed at all now, sleeps on floor, has done for weeks. (he has to make his own bed the way he wants, gets angry if you help him, Callum's words 'it's not the right amount of scrumples')

Has become violent towards others. Strangles adults if he is not correctly understood or is in a 'mood'. Cannot control anger towards others, lashes out regularly at siblings.

Getting very difficult to teach. Refuses to learn words which don't sound like they are written. ie. BOAT Callum will learn as BOWT. He will not be told otherwise even though he is extremely intelligent.

Will 'conform' in new situations he is expected to conform in as long as they are not too unusual. eg. school - his nursery brushed off our concerns as he hardly displayed them in the few short weeks he was there. Old nursery witnessed these behaviours and provided 1 on 1 but did not help further.

If he realises theres no way he can get away with a certain behaviour, he will change the 'parameters' so he can still cope. i.e. he might say 'yes that's what I meant' if it means he can still get his way.

Is far more comfortable in the company of adults

Laughs and cries for no apparent reason. eg. At a recent meeting I attended where he was the only child, the adults were laughing around the table. Callum started laughing forcibly and uncontrollably though he did not get the joke. He often does this when nobody else is laughing, or if somebody is crying, he may laugh instead.

Starts most of his sentences 'don't forget'. i.e. 'mummy, don't forget there is a picture of Bambi on the wall at my new club'. despite the conversation being about something totally different.

Edited July 19, 2012 by JCB

[Sally44]

For a diagnosis you usually need a multi disciplinary team to see the child, which often includes Developmental Paediatrician, Clinical Psychologist, Speech and Language Therapist. So I would push for him to be seen by these other professionals and to be on their waiting list. Because if you see the Paediatrician, and they refer you to speech and language, that can be another 6 months etc and it will be years before you get a diagnosis.

 

I think you also need a referal to Occupational therapy. To an OT that has experience of assessing children with an ASD for things like Sensory processing Disorder [hence the appearing deaf, not feeling pain from substantial injuries, yet feeling extreme pain from small cuts, not being able to tolerate washing his hair - I presume cutting hair, fingernails is also a no go area. It can also affect the balance and co-ordination systems so often children find it difficult to run, climb, hop, write or draw, cannot brush their own teeth or tie their shoelaces or ride a bike].

 

This is just my opinion, but if he is going to be seen by a Paediatrician, and probably a Clinical Psychologist, I think the most useful private report might be from a Speech and Language Therapist because having problems with language and social communication and play skills and emotional regulation and recognition are all under the SALT, and a private one will be much more thorough than an NHS one. Also a private OT because it takes years to be seen by OT [but maybe worth being on their waiting lists anyway].

 

My son's speech is very similar to your sons. He can sound quite articulate in his areas of interest and yet has other words and areas of language that he knows nothing about. Also his understanding of what he is saying is not that good. It is like he has the jest of what he is saying in a complete sentence form, but not what the individual words actually mean. And so if you ask him a question you may get a totally unrelated answer. My son also had alot of problems with pronouns. He didn't understand that 'mum' can also be she, her, or part of them, us, they, everyone etc. He always referred to himself by name and never 'me' or 'I'. And he struggled with things like "if we are walking on this side of the road, the otherside is 'that' side of the road - but if we cross the road 'that' side becomes 'this' side and what was formerly 'this' side now becomes 'that' side. It was the interchangeability of pronouns that really stumped him.

 

He also used to ask alot of questions about the same thing. For example he used to be in Cubs, and they were doing a late evening walk and everyone needed to take a torch. His questioning was something like this. "Are we taking a torch?" "Is the torch for me?" "Are all the kids taking a torch?" "Will we be using the torch?" "Will it have to be dark to use the torch?" "What do we need the torch for?" "Are we looking for things with the torch?" "What happens if the torch does not work?" "Are we sleeping overnight and that is why we need a torch?" And on and on and on it went. It is the same with any instructions he is given. He does not really grasp what he has been told to do. He always has to find an adult and start asking lots and lots of questions.

[Sally44]

This a link to a government document called the Autism Exemplar. It is supposed to be an example of the process of a child receiving a diagnosis and support from various services, and it is all timescaled. I would suggest you read it and print it off and start asking various services to get involved or find out how you need to be referred to them asap to try to speed up the process so that it resembles this document.

 

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

[Sally44]

You could also telephone the Paediatricians secretary and ask if there is anyway your child could be seen inside of 9 months [contact your local hospital PALS service to see if they have advice about referal times].

 

The basis of your seeking an appointment as early as possible is that currently he is not going to be starting school this Septemer [although he could be]. And if it is going to take 9 months for him to be seen, and then a further xx months for other professionals to see him, that means that even by next year he may not have a diagnosis. And as you know, you need a diagnosis to get a placement in a special school.

 

Is he not at nursery at all? I would suggest you push for him to be placed at a nursery that has experience and expertise in autism. Is the Health Visitor involved. She can refer on. And they could also refer to professionals via education and early years rather than just via Health and the NHS. It is hard to get your head around it but there are basically two ways to access professionals ie. via Education or via Health, and sometimes the waiting times via one referal is quicker than via the other.

 

Also phone your local authority and ask to be put through to the Early Years co-ordinator and explain that you have recently moved into the area, that your son is 4.5 and not in nursery and not starting school this year. That he has been referred to the Paediatrician and that you are expecting to receive a diagnosis of autism. Ask for them to come and observe and assess him so that he can have a suitable nursery placement.

 

If he is as severe as you think, he will most likely need a Statement of special educational needs, and that can be sought by writing to your Local Authority and asking them to carry out an assessment towards a Statement. But it would help to have the Early Years teams involved because the LA will need to ask them to assess and make reports.

 

So who is involved with your son at the moment?

Edited July 19, 2012 by Sally44

[JCB]

Thank you for your replies. The paed secretary is back next week and has a message to call me. The HV sent the referral through as urgent so apparently my son is top of the list. We shall see.

 

Apparently this paed is the 'usual' way to get a dx of autism in my area. SHe's just a general paed and she has to decide whether to refer him onto the CDC locally. Seems a bit roundabout to me.

 

He's not in nursery at the moment, I did have him in the nursery of the school he was due to start in September (my eldest attends this school too). They were so rubbish with him that I pulled him out and turned down the reception place as nursery and reception share the same teachers/ classrooms.

 

The local autism support group passed me onto a local nursery who deal with autistic children but they said there's no point in sending him there as its only up to school age kids. It's too much disruption sending him there for a couple of months only. I think he really needs the input that this sort of social environment can provide, even though he won't join in with the others.

[JCB]

We have just the HV who agrees with us, the GP who agrees with us and a referral to this general paed. There is nobody else involved at present. I just don't know where else to go.

 

I will take the advice though and go for a private SALT.

[Sally44]

I would get in touch with your Local Authority Early Years Co-ordinator or Portage, whichever they have. Usually, if he were in nursery, he would have been flagged and referred to them. But as he is not at nursery he is off their radar. So phone the LA. You should have an Early Years person to contact. If not, ask for the Autism Outreach Teacher and she should know who he should be seen by.

 

If you do decide to use a private SALT, I would obviously discuss the cost of it, and also what she is going to do. You really need her to carry out standardised assessments [usually ACE or CELF 4], as well as some social communication assessments which maybe completed by yourself. You need all areas of his receptive and expressive speech, social communication, play skills, and emotional literacy to be assessed so that you get a baseline reading from which you can measure progress. Because the SEN system is a graduated one, so you need to be able to prove/demonstrate that progress has not been made before additional services/input/support and therapy is provided.

 

There is a charity called AFASIC which is for children with speech and language impairments. It might be worth contacting them to see if they can provide anything at all during this time that he is being assessed and is not in school or nursery.

 

If he is not going to start school this September, he needs to be in nursery for the next academic year. And if he needs a special nursery you need to act fast, because most, if not all, of those places will now have been taken. He needs to be receiving support and input otherwise he could fall further behind.

 

If he is at a nursery that cannot meet his needs, they need to put that in writing and they need to seek professional help. If you just withdraw him that is seen as your parental choice, and not that you withdrew him because he was not coping there. The nursery should refer on to Early Years professionals if he is struggling, that is the whole point of the referal system.

Edited July 20, 2012 by Sally44