Hi, new and confused

[mumtothree]

Hi all

my 4 1/2 year old son brings me here, hes yet to be diagnosed but hes due to see the community paed for a social communication assessement in February.

its been a very long time coming as we have had concerns about him since he was 9 months old but always been brushed off as nothing to worry about.

we have had a connors parent and teacher rating scale to fill out, as theres concerns about ADHD, as well as austic traits.

hes main problems, are

Concentration and behaviour

short attention span

does not keep still

always on the go

poor co ordination and poor fine motor skills

hand flaps

covers ears to noises

obessions and routines

poor eye contact

doesnt play or talk to the children in his class

alot of sensory issues with touch, feelings

plus many more things.

 

however he is a very bright boy, hes reading, phonics etc is above average however the school cannot give him the 1.1 he needs. hes been on a IEP since october which hasnt had any affect.

 

i wish i could understand him, some things he gets so upset about about something as simple as a tv programme which he cant watch

i really cannot wait til we get seen

 

[gemgems77]

welcome to the board

[ScienceGeek]

Welcome to the forum

[brooke]

Welcome to the forum <'>

Your description of your son sounds so much like my boy when he was that age... He is 8 now and slightly calmer!! Once he got support at the right school it changed everything for him and us . Hope you get seen soon and recieve the help you need <'>

[NickyB]

Hello and welcome

 

Sound just like my son - he's 5 and has a diagnosis of high-functioning autism. His school have been great and genuinely try their best, but I'm beginning to think he may need 1:1 teaching for most of the day - something they might find hard to provide as things stand.

 

I know what you mean about not being able to understand him - it's so frustrating. I'm hoping that will improve with age

 

Take care

 

Nicky <'>

[Kathryn]

Hi mumtothree

 

Welome to the forum, and good luck with the assessment next month.

 

K x

[mumtothree]

hello and thank you all for ur replies

i know its going to be a very long and stressful journey ahead just soo frustrated its taken so long to sort out and try and get him and us the help

[mumtothree]

hello i thought i would restart here as its been a while since i posted

 

brief update with matthew, feeling quite alone and frustrated at the mo.

matthew had a ADOS assessment in april after seeing the community paed in feb. the ADOS assessment was inconclusive but he had significant difficulties in social communication, social intreaction and social immagination. hes due to be assessed at school by OT and SALT.

paed says school and education should provide matthew with same care given to child with autism even though there is no offical dx yet. however school r saying no diagnosis not much they can do. hes on school action plus, 5 hours a week. ive asked again about statementing and been told by senco it would be refused as hes clever. i get told by his teacher come year 1 hes going to struggle but they say while hes numeracy and reading is way above average hes not struggling in those areas so a statement would be refused.

im so worried about september.

hes also waiting for a sensory assessment, ive neen keeping a diary of all his odd ways. at the mo hes frusttrating us with crying at things, instead of speaking he cries, last few days have been about things being thrown away. hes always sensory seeking, smacking himself, poking things in his eyes. he also keeps finger crossing and i mean hes doing it for hours and hours.

 

all we have to do now is wait for ass at school end of month and see what they find and then bk to the paed to hopefully at long last come away with a diagnosis and then the school cant argue (not hope not)

 

[marmitemummy]

Hi and thanks for your reply,

I have just been reading your post and your son does sound alot like mine when he was that age, I found I was forever saying " don't cry just talk to me" I have to say that some things have calmed down in public as he has got older because he has learnt to control them himself . But he still gets very angry and frustrated at the smallest things at home, I have learned to not even go down certain routes as I know how he will react (and thats just with silly little things) but 12 year old sisters are not quite so forgiving!!!!

 

Hope all goes well

[Sally44]

hello i thought i would restart here as its been a while since i posted

 

brief update with matthew, feeling quite alone and frustrated at the mo.

matthew had a ADOS assessment in april after seeing the community paed in feb. the ADOS assessment was inconclusive but he had significant difficulties in social communication, social intreaction and social immagination. hes due to be assessed at school by OT and SALT.

paed says school and education should provide matthew with same care given to child with autism even though there is no offical dx yet. however school r saying no diagnosis not much they can do. hes on school action plus, 5 hours a week. ive asked again about statementing and been told by senco it would be refused as hes clever. i get told by his teacher come year 1 hes going to struggle but they say while hes numeracy and reading is way above average hes not struggling in those areas so a statement would be refused.

im so worried about september.

hes also waiting for a sensory assessment, ive neen keeping a diary of all his odd ways. at the mo hes frusttrating us with crying at things, instead of speaking he cries, last few days have been about things being thrown away. hes always sensory seeking, smacking himself, poking things in his eyes. he also keeps finger crossing and i mean hes doing it for hours and hours.

 

all we have to do now is wait for ass at school end of month and see what they find and then bk to the paed to hopefully at long last come away with a diagnosis and then the school cant argue (not hope not)

 

I don't quite see where he did not tick the boxes in the ADOS assessment. You have mentioned social communication, social interaction and social imagination difficulties. The only thing on top of that in the DSM IV criteria for a diagnosis is a need for routines or having problems with change.

Can you tell us why they don't think he is on the spectrum?

You can google DSM IV for autism and see the criteria.

My son also likes to watch TV and gets upset if he cannot watch at least one film a day. And turning off the TV halfway through a programme is a no-no. And telling him we have to got out so he cannot watch TV (ie. change his expected plans for the day/evening) and he would also get upset.

You may find that some of his behaviours you and the professionals are not recognising as being on the spectrum. That is common.

Who carries out the ADOS assessment? Have you been referred to a multi disciplinary team that has experience of diagnosing ASDs?

Have you been referred to Speech and Language Therapy? The SALT who saw my son told me to expect a diagnosis of an ASD after she had assessed his language skills, social interaction and play skills. We went on to further observations and assessments and finally got a diagnosis 18 months later.

If you suspect sensory integration disorder then ask for a referal to OT. That may take a long time (in our area 2 years), but get his name on the waiting list anyway.

 

[Sally44]

I wanted to add that we did not do this ADOS assessment for our child. So I don't know what it entails.

However my concern throughout any assessments for my own child was that these were always carried out one to one in a quiet environment. The school classroom is not like that. So additional observations should be made in school over a period of time.

Also children are variable. On a good day my son can appear mildly affected to the extent that I could even question his diagnosis. Yet on another day he can be anxious, stressed to the point of vomiting, refusing school or to comply to anything. Having a meltdown that tires him out for the rest of the day. Sensitive to everything he sees, hears, smells or that touches him.

Keeping a daily diary of events and behaviours can be very useful. I started one expecting the results to prove that my son was not autistic. In the end I totally proved he was

[mumtothree]

hello and thank you

they feel they r not sure if all his other problems r making the issues he was assessed for worse. ie sensory and not seeing to understand what was being asked of him. the ADOS assessment involved a paed talking to us, and a OT and SALT assessing matthew. i will dig his report out in a bit and put some of the pointers. they felt with the possible sensory and language difficulties where infact making things worse for him. personally for years i have felt hes on the spectrum and we was told we would get a answer at the end of the 3 hours and we didnt.

hes awaiting a sensory assessment, he had a motor one but they couldnt see anything obvious but many people have mentioned dyspraxia to us.

once he had the OT and SALT do there assessment at school then they go over there findings. we r due to have a re assessment in october (6 months from his last one).

i think at school the obessive with the routines etc wasnt noted so im unsure if that is what is putting it on hold. when the kids go to bed i get his report and write a few pointers made.

its very frustrating esp with the school who see he has problems with mainly his concentration attention etc but not the full picture

[mumtothree]

I wanted to add that we did not do this ADOS assessment for our child. So I don't know what it entails.

However my concern throughout any assessments for my own child was that these were always carried out one to one in a quiet environment. The school classroom is not like that. So additional observations should be made in school over a period of time.

Also children are variable. On a good day my son can appear mildly affected to the extent that I could even question his diagnosis. Yet on another day he can be anxious, stressed to the point of vomiting, refusing school or to comply to anything. Having a meltdown that tires him out for the rest of the day. Sensitive to everything he sees, hears, smells or that touches him.

Keeping a daily diary of events and behaviours can be very useful. I started one expecting the results to prove that my son was not autistic. In the end I totally proved he was

 

hi was meant to do this last night but fell asleep.

at the end of matthews report it states

 

The ADOS assessment was scored by the therapists. The ADOS indicated that Matthew does have difficulties within the 3 areas of social communication, social interaction and social imagination.

However it was felt that further information needs to be obtained from Matthew's school, sensory assessment and language assessment before a full diagnosis can be given.

 

CONCLUSION. Although Matthew does have significent communication and interaction difficulties, it was felt that he requires a formal assessment of language and sensory processing difficulties before a definate conclusion can be made.

 

RECOMMENDATIONS. 1. formal speech and language assessment. 2. sensory/motor assessment. 3. pending assessment we request the education department and the school to provide matthew with the same support as would be provided to a child with social communication disorder.

 

going over his report under language and communication they noted that matthew used sentences to comment and answer questions thoroutout the assessment, although these were occasionally difficult to understand or appeared to be out of context. the structures of his language sometimes appeared to be sterotyped. (not sure what they mean by this). his responses to questions were not always approiate although this may have been as a result of a difficulty in understanding (or processing) of language.

they went on to say that it was possible to have simple conversation with matthew he did sometimes respond to questions and comments from the therapist inviting questions altough the listener at times had to work hard to maintain the flow of conversation as he did not always reply in the expected way.

 

theres 8 pages of it so just picked up a couple of bits from it.

[Sally44]

hi was meant to do this last night but fell asleep.

at the end of matthews report it states

 

The ADOS assessment was scored by the therapists. The ADOS indicated that Matthew does have difficulties within the 3 areas of social communication, social interaction and social imagination.

However it was felt that further information needs to be obtained from Matthew's school, sensory assessment and language assessment before a full diagnosis can be given.

 

CONCLUSION. Although Matthew does have significent communication and interaction difficulties, it was felt that he requires a formal assessment of language and sensory processing difficulties before a definate conclusion can be made.

 

RECOMMENDATIONS. 1. formal speech and language assessment. 2. sensory/motor assessment. 3. pending assessment we request the education department and the school to provide matthew with the same support as would be provided to a child with social communication disorder.

 

going over his report under language and communication they noted that matthew used sentences to comment and answer questions thoroutout the assessment, although these were occasionally difficult to understand or appeared to be out of context. the structures of his language sometimes appeared to be sterotyped. (not sure what they mean by this). his responses to questions were not always approiate although this may have been as a result of a difficulty in understanding (or processing) of language.

they went on to say that it was possible to have simple conversation with matthew he did sometimes respond to questions and comments from the therapist inviting questions altough the listener at times had to work hard to maintain the flow of conversation as he did not always reply in the expected way.

 

theres 8 pages of it so just picked up a couple of bits from it.

 

When your son is seem by the SALT I would advise you to get her to state whether he has a 'delay' or a 'disorder'. From your post I suspect a disorder. What is the difference? Well 'delay' means there is always the potential to catch up. However those on the spectrum have language and social communication difficulties as part of their disorder and that disorder is for life. So, if your child is said to be delayed, they can be discharged from SALT and there is not SALT input in secondary school. If your child has a speech disorder that means it is for life, and although there will be improvements that disorder will remain and they cannot be discharged from SALT. I believe many children with an ASD are incorrectly labelled delayed to stop the obligation of SALT to continue.

These are some of the things my son did/does:-

Echolalia. This can be immediate or delayed. It means repeating things they have already heard either from a person, or TV or a film. It can be in context eg. someone says hello to the child and they reply "Hi you guys" which is a phrase taken from a cartoon. Or it could be out of context eg. a question is asked "what is the man doing in the picture" and the child replies "red" because the car in the picture is red.

My son also used to give totally unrelated answers to questions.

He had difficulties with pronouns. Did not know when to use I, me, you, him, her, she, he, they, them, us etc. If I said to him "You ask me a question", he would repeat it straight back. He had no idea what I was actually asking him.

Strange voice intonation and pitch. My son has an American accent (we have never been there, it is picked up off Walt Disney), he also has a slightly high pitch and places the emphasis on the wrong parts of some words. He sometimes sounds like a foreigner speaking English!

He is diagnosed with Central Auditory Processing Disorder, and therefore hears letters/words differently and pronounces them incorrectly eg. bokano for volcano, globes for gloves etc.

He was diagnosed last year with Semantic Pragmatic Speech Disorder which is now considered to be a continum of the autistic spectrum.

His expressive speech is age appropriate, but his receptive speech is severely affected due to CAPD and auditory processing delays.

So have a think about those types of things, and if you feel your child is also doing these things then talk to the SALT about it and how they will assess for these difficulties.

Also know that SALT are the professionals who assess for social communication and play skills and put together supports and strategies to meet those needs. As he already is identified as having these problems then they need to put something into place asap. Ask them about SCERTS. This is an ongoing social skills monitoring process that all professionals involved with your son can use to quickly identify what social skills he has and which ones he is poor on or which are missing.