Autisitic spectrum-advice needed please (long post-sorry)

[Tiggiwinkle]

I am somewhat in shock at the moment. My 5 year old DS was assessed by a peadiatrician yesterday and she feels he may fall within the "autistic spectrum". To put this in context, he was first referred to the child development centre when I expressed concern at his 3 year check about his "hand-flapping". I have an older son, now 15, who is dyspraxic and had also "flapped" which is why I was conecerned; my youngest DS had no other symptoms of dyspraxia as far as I could tell. The paediatrician who saw him as a result of this referral did not think there was a problem, but referred him to the OTs for assessmment just to be sure. The OT felt he did have some minor symptoms of dyspraxia-poor pencil grasp, cutting skills, problems crossing mid-line etc-and referred him back to the paediatricians. The assessment yesterday was the result; but the consultant does NOT feel he has dyspraxia. Instead she feels the hand-flapping together with some behavioural issues (very difficult with food; acute anxiety; compulsive routines etc) may put him in the autistic spectrum. Autism is something I have considered but had discounted: I had the classic view of autism as resulting in a non-communicative, non-tactile child. My DS has always been very affectionate and loves cuddles: his vocabulary
is excellent and he seems popular at school (although he has started saying he has no friends there). We now have to wait for him to be seen by a clinical psychologist and the paediatriacian will liaise with the school.
It is just such a shock to be told something like this, although it does provide an explanation for his sometimes difficult and stubborn behaviour. Has anyone had a similar experience of diagnosis at this age?
And are there any recommended sources of reliable information about this type of disorder?
Many thanks for any advice.

There is a lot of advice available for asd (Autisic Spectrum Disorders), my little boy was 21/2 when he was diagnosed with Aspergers syndrome one of the asd's. He is now 9 and has only just started the Handflapping.

First start with the NAS National Autisitc Society. They give a lot of general adive. Then look around your area for an autistic helpline/society. Where are you located?

If you need any general help I'll do what I can,as will a lot of other MNers who are in the same situation, YOU ARE NOT ALONE belive me. It is hard in the beginning but it does get better.

HTH

Tiggiwinkle. Don't have a lot of time at the moment but there is heaps on this site about autism and a few mums on this area with autistic children. Indeed an autistic child can be affectional and communicative. My ds is 5 now (diagnoised at 3.10) and very communicative - too much so! However autistic children vary greatly and some may not speak (although communicate in other ways).

It will be a shock but it will help in the long term with support (eg DLA) and help at school.

A good starting point for information is the National Autistic Society at www.nas.org.uk

All the best

Tiggiwinkle, you will find lots of support here. I am new to mumsnet and have found it really supportive. My DD (nearly 4) has 'classical' autism and was diagnosed at 2 and 3 months. It is a shock at first but also a relief as often a lot of things suddenly make sense. I am amazed at how different children on the spectrum can be. My DD is incredibly affectionate- when she wants to be! Any questions, ask away... There are lots of mums on here with children on the autistic spectrum all with different tales to tell.

Tiggiwinkle, in the pastfew months, my son has had four different diagnosis from four different 'experts' on child behaviour. Pediatrician linked to school said he was NT, school teachers said he was displaying autistic behaviour, paediatric neurologistsaid he was dyspraxic - possibly on the autistic spectrum and the occupational therapist said definately NOT dyspraxic but had sensory integration disorder.

Whilst the diagnosis have been very confusing - one thing that is very clear is that the eight sessions with a paediatric OT has been a huge help. We decided to go private as we were told that the best we could hope for was waiting months for an assessment on the NHS and we wanted to use the summer holidays to get our son as much help and support as possible.

The reason I am letting you know of ourexperience is that I am not sure about the diagnosis of these things sometimes and oursone who is just under six years old has/had very similar 'traits/symptoms' as your son seem to have and has benefitted hugely from the right kind of occup[ational therapy.

Might be worth reading a bit more into it and seeing what you think. Autistic behaviour is usually extremely difficult (way beyond "sometimes difficult and stubborn") that I almost wonder if the paed has become a bit overexcited because f the hand flapping! It's more usual that even if the parent hasn't considered autism they have wondered what on earth is wrong with their child, and why everything is so hard- What sort of compulsive routines does he have?

Do you know how experienced the paed is? How has your son been coping with school?

IME mother's are often better at dx than paeds- have a read of some books - Jessica Kingsley publishes a wide selection- something like Mike Stanton's book on high functioning autism might be a good place to start- and see whether it rings true for you.

Children with dyspraxia hand flap as well!

Many thanks for all your replies.
Jimjams, I really do not know what to think at the moment. I have a 15 year old with dyspraxia and he did the hand-flapping; this is what initially raised my concern, although my youngest DS has not had anything like the same kind of difficulties as my 15 year old.
He has found the transition from reception to year one very difficult; he seems to have focussed his anxieties on a toilet routine, becoming very worried about using the toilets at school and insisting on sitting on the loo for a long time to ensure he will not have to "go" at school. In fact I have to physically drag him off the toilet some days and he becomes very distressed.
Perhaps the most bizarre behaviour occurred during the Easter holidays. Again he had been quite stressed by school, and during the first week of the holidays he became obsessed with spiders. He would wake in the morning and his first words would be to ask if he had a spider on his face, or a spiders web. He would ask many times during the day various things about spiders and what they could do to you and was generally extremely anxious and inconsolable. Gradually, this all subsided and by the time he went back to school he was a lot more relaxed. He had never been afraid of spiders before and has not been since!
There are also issues around his food-he will not eat anything new and the only vegetable he will eat is cucumber.
He tends to be difficult to settle to sleep and is often awake until 11 or 12 at night.
He has good days and bad days at school in terms of his behaviour-basicially if he is tired he becomes more difficult to manage.
He can also be quite demanding-insisting on a particular cup for his drink, or spoon or fork to eat with and absolutely refusing any alternative.
I have 4 older sons and he is definitely the most difficult and downright exhausting at times. But as I said, I had discounted autism because of his good communication skills and affectionate nature.

Affection is always a bit of a red herring tbh as the children vary so much. My son (age 5- more severe end of the spectrum- still non-verbal) is very affectionate. However an autistic child - even if high functioning- "should" have problems with communication- its part of the diagnosis iyswim. Does he use language in a strange way (over precise for example) or have trouble interepreting non-verbal communication?

Have you tried the Sally- Anne test with him (type it into google to find an example- I can never find a good one!)

Have a read about high functioning autism/Aspergers and see if you think it fits. Anxiety is certainly part of autism, but it can be there by itself as well I guess.

I will do some research as you suggest, Jimjams. He has gone to sleep early tonight as he has a tummy bug, but I will try the Sally-Anne test tomorrow.Do children with Aspergers fail it as consistently as those with other forms of autism?

Hi Tiggiwinkle
My son who is now 17 was also labelled (originally) as autistic spectrum - now is diagnosed as Global learning delay. What I am saying is that when they are that young if there is a problem with processing language they are seem to be labelled 'autistic spectrum' and that is whether they have a problem processing or expressing language. My son now is not diagnosed as autistic, but has expressive language problems (speaking) - but he also had feeding/sleeping and repetitive problems when younger. As you already have the dy's running through your family with your eldest's dyspraxia have you thought about dyslexia - as in language processing and especially auditory dyslexia - hearing words but not understanding them. I have eldest son rating at 34 on the psycologist scale for expressive language and youngest son rating at 127 for language processing (too much speach!) - both are at extreme ends of the scale and both bring problems with their ability with language! Whatever they diagnose - speech therapy input plus OT etc is not to be refused - and while they input - keep searching for what your gut feel is the true answer! Also if your other sons will bring out the best in your youngest - let them do some therapy of their own - wanting to join the older brother is always a drive!

Not all do fail it Tiggiwinke- although most high functioning adults I have spoken to say although they have learned to pass the Sally-Anne test and although they "know" - because they have been taught - the theory behind it- it's not something that is intrinsic to them. They have to remind themseleves that others don't know what they are thinking. And these are people who are living independently with children of their own!

The Sally-Anne test isn't diagnostic as such but does give a further clue to the the sorts of problems your son may be having.

Hope he's feeling better tomorrow.

Jimjams-DS failed the Sally-Anne test. I must admit I was surprised by this as I expected him to "get it".
I have been scouring the autism sites on the internet-my head hurts! But I have not found anything which I feel fits my son exactly.
What is "echolalia"? My DS, until quite recently, did used to repeat a lot of what was said to him-you would say a sentance to him and he would repeat it back to you. It used to seem to me that it was his way of processing the information-but I was never in any doubt that he understood what had been said iyswim.
I am also a little concerned about his relationships within his peer group, because he is saying that he now has no friends.(despite being invited to parties etc) My 11 year old DS visited the primary school on Friday as his new secondary had an inset day, and he said DS5 was walking aroud the playground completely alone during the break.
Academically he is doing well-he is beginning to read and his maths is good (unlike my dyspraxic son who has dyscalculia as part of his problems). All those who have aseessed him so far have said that he is a bright, intelligant boy.
I just dont know what to think!

If he failed the Sally-Anne test then it is definitely worth keeping an open mind to high functioning autism. (although as I said before its NOT diagnostic- also depends on his age- children should pass it easily by 5 though). Echolalia is repeating the words back but often without meaning. DS1 uses set phrases, but always in context although sometimes the meaning isn't quite right (for example he said "i'll get the keys" when he wanted me to open the car boot). He doesn't do "video speak" but probably because he doesn't have enough speech.

Do you know why your son is by himself at playtime- is it his choice?

From what I can gather now that I have asked him, the incident on Friday when he was walking around alone does not seem to be an isolated one. He says that he always walks around alone because he does not like the people who used to be his friends and does not like the things they do ie play football.
This is his first term at the school without the company of his older brother who used to look out for him at break times.
I will ask to see his teacher this week to find out what her impressions are of his relationships within the class.

Worth asking his teacher whether something can be set up so he is included more as well..... Some schools are quite good at that sort of thing. What do the school think about the whole autism thing. I have to say that if he is autistic he sounds as if he is coping very well and the dx would be a good thing as it would allow everyone to identify problem areas before they become a problem iyswim.

Being autistic doesn't preclude being bright. That is when you have autism AND a learning disability which is very common but not my all means always the case.

Ds1 is 4yrs old and was diagnosed with autism at 3.7yrs. He too can be extremely affectionate although this is strictly on his own terms. He often gives me spontaneous hugs and kisses. He is also very bright and tends to absorb information fairly quickly, especially if it is something visual.

He used to have a lot of echolalia but did it so well that strangers often didn't even realise that he was actually just copying what they were saying, eg if asked "Do you want a biscuit?" he would echo "Want a biscuit." At the time he knew what a biscuit was but had no idea about the words "you" and "want". Those words were far too abstract.

He did go through a long phase of arm-flapping but this rarely happens now unless he is really excited or upset about something.

My ds did a lot of echolalia around age 4, sometimes he said things completely out of context. He also had and still has a semantic pragmatic language disorder and would swap words, sometimes opposites which was fairly easy to work out what he meant but other times it could be quite bizzaire or would use words that sound alike. He has started using echolalia again more recently as his speech is improving - he often asks me what I am doing and will repeat my reply. How is your ds with abstract words and talking about feelings? Can he tell a story or make one up himself?

My ds is also fussy about food - does sound like your ds is on the spectrum although I am only saying this on the basis of what you have said here. Are you going to try for a diagnosis?

Oh yes and how is his awareness of other people's space? My ds is hopeless and will swing things or push things right into the path of others, eg jump on someone in a ballpit. He once swung the shopping trolley into a table in the cafe. I have a lovely bruise on my lip as he bashed me with a tennis racquet. An accident of course and I shouldn't have left it lying around. He will also use things inappropriately eg swing his dressing gown by the cord or wind anything long like string/ribbons round chair legs.

I have 1 son aged 10 diagnosed with ADHD at 7 and Asperger's at age 9......he is very affectionate....to the point of extremes- and inappropriately so....will kiss and cuddle everyone the same way. (at 5 he wanted to hold and hug every child in his class- he used to kiss and lick them too) He has an amazing vocabulary- but speaks in a rather 'single tone' way and again to everyone in the same way.....unable to adjust his manner according to the audience. he still finds buttons/zips difficult-and food textures still cause trouble. He hates being touched- though like coppertop said he will cuddle freely- on his terms....it's as if to cuddle he has to innitiate it- otherwise the slightest touch (particularily neck/shoulders) causes him to flinch back as if hurt.

he too struggled to get to sleep for years- and by 9 he was rarely asleep by 12/1am. Then when diagnosed with the asperger's he was prescribed MELATONIN- which regulates the bodyclock- and we have not looked back- he is always asleep by 10 at the latest now.

My 7 year old is being assessed too after i insisted.

He is obsessive about routines,time,counting and 'whatever toy/t.v show ' he's into at the moment (Yu Gi Oh is his thing at the moment)

He too has an enourmous vocabulary- and is a total chatterbox....but he basically speaks a 'running commentry' whenever he is playing...and is ignorant to the interest of his audience. He will also use 'odd' 'out of context/over precise' words....eg he will often say 'correct' instead of 'Yes'.....which is too formal when someone says 'would you like a biscuit?' etc- he also moves around constantly when talking to me- so though he actually has intense eye contact- he cannot hold it for long

basically....if i were to list all the boy's many 'oddities' they would between them cover alot of the spectrum.....but both are totally different and this has taught me that there is no 'Typical' asperger's type!

keep us imformed

Many thanks once again for all your comments.
I have not yet spoken to the school about the possible autism-it was mentioned for the first time at his assessment on Friday and I was in too much shock to discuss it with his teacher when I took him into school afterwards.
I am going to ask for an appointment to speak with her privately tomorrow.
Eulalia-my DS does seem able to express his feelings. (For instance his hamster died recently and he sometimes says he is sad about it.) I am not sure about telling a story of his own-I will have to try him out with that one, as I must admit it is not something I have thought about. I have not noticed any problems with respecting others space either.
I will let you know what response I get at school tomorrow.

Just wanted to echo what Davros said - my DS1 has high-functioning autism, but is doing very well academically. However he often really struggles to use his language to communicate ideas or experiences - as opposed to answering a direct question, or identifying something, or wittering on about buses and trains!

Well, I spoke with DSs teacher today and explained what the paediatrician had said.
She said she has taught autistic children in the past, and she would not have thought of DS as having autism:although she did say she supposed he could be "very high functioning".
She said he can be disruptive at times, especially in PE. When she reprimands him she feels he is sometimes not listening and he appears to look right through her. She also feels he is sometimes quite defiant, either not following her instructions or deliberately doing the opposite of what she has asked. He also tends to go into a world of his own sometimes during "carpet time" (but then, he is only 5...)
She feels he does relate to a group of boys in the class, but admitted she cannot really say what happens in the playground-she will ask the staff on playground duty to keep an eye on him and let me know if he is really all alone at break times.
There is still an issue with using the toilets-shortly after he moved into year 1 I discovered the teacher was telling him off for wanting to go to the toilet immediately he arrived at school, and frequently during the day. I had to ask her not to make an issue of it as it was a sign of his anxiety.( Although he is very reluctant to use the school toilets to do a "poo" he conversely gets very anxious if he feels there is any restriction on his visiting the loo to do a wee and as I told her, he would have only just got off the toilet at home in order to come to school anyway!) I am not convinced she is treating this as matter-of factly as I would like as she said today that it is disruptive to the other children when he leaves the class frequently. I suspect he is picking up on her annoyance even if she is not directly reprimanding him.
Anyway, I will be meeting with her again on Wednesday as it is Parents Evening.
He said to me this morning as I was getting him ready "I really REALLY hate school Mummy". It makes me so sad...

no disrespect to teachers....but no 2 ASD kids are alike - just as no 2 NT are alike....she isn't qulified.....and sometimes in an effort to be nice can confuse the parent more.

BUT I AM BEGGING all you WONDERFUL teachers who seek info on MNet....please don't hate me....

i have no experiece of autism, but i saw an amazing segemtn on richard and judy the other day about autistic children and a new therapy from america with incredible results - guess you could contact the program for further info - wishing you lots of luck and best wishes xxx

Tiggiwinkle, really, really sorry to hear that. Bless him. Agree with Mrsforgetful, sounds as if this particular teacher has enough experience of autism to say to you he is or isn't on the spectrum. Thinking of you and hope you get the help you need for your DS, whether he is dxed with autism or not.