DS just diagnosed with ASD

[bunnyrabbit]

Hi all,
I've been on mumsnet since 2003 but I'm new to this section as DS1 (5.5) has just been diagnosed with ASD. Friday 13th in fact.
Please forgive the following ramble but I have to write this all down somewhere for the sake of my sanity.....

We've always known in our hearts that DS1 was.. well.. different. Somethimes just plan mad/loopy/excitable (almost endearingly so)other times worryingly emotional for a child of his age. He never grew out of those 2 year old tantrums.

I'm sure my DS's issues are pretty insignificant compared to most children. I feel a fraud really asking for help. At the assessment he was diagnosed as having a social communication disorder. They said he was at the able end of the spectrum and the SALT commented that his speech, vocabulary, understanding etc. is advanced for his age. They gave me a vast array of pamphlets, info and told me the SALT would be in touch concerning a home visit.

I'm feeling a bit lost at the moment. No doubt feeling what many of you have before: Upset, angry, impotent, ingnorant..... I've read the info and looked at the NAS website and the S.A.F.E website but just can't get my head round it.

All the literature states that the the 'Triad of impairments' affect all children with ASD. And yet DS1 has no issues with his imagination. In fact he has the most incredibly wild, vivid and extraordinary imagination. So how can he be diagnosed with ASD?

I am waiting for the OT to call me and discuss but I'm really very confused by the whole thing.

As usual in times of need I turn to mumsnetters for reassurance and guidance.

BR

[amber32002]

As an adult with an ASD, I'd say there's nothing wrong with the imaginations of most of us, to be honest. People with an ASD have become the most incredible artists, for example. We might struggle to imagine people interacting with each other in a very useful way, but our brains are wired up in ways that mean we can often put together different ideas, different thoughts, in amazing ways. But we may not share it with others. That's the difference. If you have a child who's just pushing a bus round the floor in the same pattern every day, it's so easy for a psychologist to say "no imagination". They cannot know that the child has invented in their heads an entire world of buses of every kind and shape and dimension, able to envisage a bus from any angle, from any perspective.

I'd get a couple of good books. Try Freaks Geeks and Asperger syndrome, and try Thinking in Pictures by Temple Grandin. They give you an idea of how imagination can work with us.

Usual things for us are sensory problems (touch, taste, texture, light, sound), social problems (eye contact, knowing the Right thing to say to someone, knowing how to join in a game in just the right way), and routine problems (if we don't know what's about to happen, we panic).

You need a large cup of tea, I think. And there's lots of people here who can share their own experiences of this and know what it's like to be in the very early days following diagnosis. Never easy, but the future is not a bad one with the right help and support.

[jealiebaby]

Dont know if this is any help but my DS1 (4.5) has an AS Diagnosis. He too is at the "able" end of the spectrum or high functioning. Dont worry about the label of AS, your DS is who he is with or without a diagnosis. By getting the diagnosis early he will be given much more appropriate help. My DS does not display all of the Autistic traits I have read in all of the books etc. but he does have some and they are enough to make life harder for him. I just tend to read the bits that apply to him and ignore the rest. You know him best and know what areas he needs help.
Whatever end of the spectrum he is I think it is great that he has been diagnosed so young.
Also remember that EVERY AS child is different so you will never read something that is line for line like your own DS.
Hope that helps.
x

[Marne]

Hi, and welcome to the sn board.

I have 2 dd's, dd1 has HFA/AS and Dd2 is awaiting a dx for ASD.

Your ds sounds like my dd1(5.1), she has a huge imagination (makes up great stories) and is ahead with her speech, understanding and is a year ahead at school. We got her dx in November, she goes to main stream school and isn't statemented, so far she is getting on ok at school apart from a small hiccups.

Dd2(2.11) is at the other end of the spectrum and has a lot of sensory issues, is non-verbal but is great with numbers.

At the moment i am attending an 'early birds course' run by the NAS, so far this has been a great help (mainly for dd2).

We are also waiting for a OT appointment for dd2 (dd1 has never had OT).

[bunnyrabbit]

Amber32002,
Yes yes yes.... this is exactly how he is. He has whole worlds and races of people he has created in his head, and these worlds are always evolving and expanding. So I suppose that's a bit of a yes for Aspergers then? Will order these books now. Thank you

Jealiebaby, yes that does help thank you. Funny how I was happy to do this with advice on raising a baby but now think I have to follow every bit of lit to the letter. I will take this on board.

Marne,
Thank you. Hopefully DS will be able to push on now that they won't just think he's being awkward and naughty when he doesn't want to do what he's told when he's told (eg. stop trying to prefect his letter and move on.) Numeracy miles ahead and reading, which was dreadful last year, has leapt up the scale but it's obviously the social, sharing, doing what he wants bits that we have a problems with. And like your DD, we have some hiccoughs, although they tend to be a bit messy......

Does she get much 1 on 1 help?

Oh and what is a statement??

BR

[4nomore]

Thank-you Amber for what you said about imaginative play!!! While they were assessing my son for ASD they'd ask "Does he do imaginative play?" And I always sort of made vague noises and described what i saw him doing but what I really wanted to say was "He doesn't speak, I don't live in his head so I'm afraid that's unknowable." Cos it just seemed a really presumptious and stupid question to me. Doh!

janine

[bunnyrabbit]

Hi Tclanger
Sorry but I'm new to this ... what's HFA?

BR

[amber32002]

ASD or autism spectrum disorder can for example include Asperger syndrome (child learns to speak early on and has a normal or higher IQ), autism (child doesn't learn to speak early on), or HFA (high functioning autism) in which the child doesn't learn to speak early on but goes on to have a high level of functioning - a normal or higher IQ etc.

It's all a bit of a mess, to be honest, and they're rethinking it.

[sc134]

Ah, so they ARE rethinking it - sorry, I have just started another thread on the definition of autism while trying to wrap my head around it. I do wonder whether we are not at the early stages of what seems to have happened with non-hearing people, where non-hearing went from being a disability that needed to be cured or pitied, to being a different type of identity, where ways have to be worked out for the non-hearing to live happily in a predominantly hearing world, but as themselves rather than as a bad version of 'normality'. Perhaps that's what will eventually happen with ASD?

[amber32002]

It already has. There are many people with an ASD who view themselves as different rather than disabled, and I respect their right to do so. But at the moment there is SO little help available, so little public understanding and acceptance, that it's a long long way from being as advanced as the acceptance into society of those who are deaf or visually impaired. I think in one conference they said that only 3 people out of 100 have any real knowledge of autism. There can't be many who don't know something of what being deaf or blind is like, because it's so easy to put your fingers in your ears or close your eyes. But trying to explain our world is very, very difficult indeed.

Much work to be done.

[jealiebaby]

Hi,

I found the whole definition thing really scary at first and thought it was really important but I have reaslised that it is such a varied thing that it is too hard to put everyone into neatly named boxes and it doesn't really matter that much anyway.

My DS is in mainstream school (reception) and has full time 1-1. He does not have a statement (statement of special needs), because the school have managed to get funding for his 1-1 without one and his SENCO (Special Education Needs Co-ordinator) said that they are trying to get away from statements as much as possible now.

He only started in Jan and we have had many ups and downs (him and the response of others) already but thankfully he is settling into a nice routine now and things are looking really positive.

[bunnyrabbit]

Hi,

Thank you for the explanations. DS1 has no other discernable autistic traits at the moment. He spoke early and although I have no idea what his IQ is (do they test it at this age?) he has an extensive vocabulary and no problems with comprehension or communication.

So now I'm wondering is the diagnosis correct? Please don't jump down my throat as I'm sure many of you are relieved to have a dx for you LOs, but I'm just so new to this that and, as I said before, I feel a bit of a fraud even being on this board. 95% of the time DS is no trouble at all and you really wouldn't know he's different from any other child. I was given a form to claim benefit for him but again I feel so foolish doing this. Although my DH did point out we both work full time and get no other benefits from anyone for anything so we should take it if it's offered.

Sorry for rambling agsain.
BR
P.S What is a statement and do I need one.

[amber32002]

BR, I'm fairly sure no-one would mind if your DS did or didn't have an ASD. We just support each other on here and answer questions if we can.
Did the person who did the diagnosis explain what they thought was ASD about him?
There are sample tests on the Autism Research Centre website at www.autismresearchcentre.com/tests/default.asp which might give you some clues about the sort of things they look for, so you can compare to your DS?

A Statement is a way to make a school provide a certain amount of individual help for a child. You can either get the school to apply for one, or if they won't, you can apply for it yourself. The charity IPSEA is a good place to look for more info on this.
www.ipsea.org.uk/

[lingle]

Bunny, the diagnosis may or may not be correct.

You may find it best to embrace and accept the difficulties and the help whilst keeping one eyebrow raised about the incoherent diagnostic criteria.

[bunnyrabbit]

Amber32002,
Thank you once again for your feedback and very useful links. DS seems to be borderline in all the tests I tried.

Seems to score very highly on some questions and not at all on others.

We will no doubt be having a discussion with the school concerning his iep so will see what they have to say before I decide if I need a statement.

Lingle,
Absolutely. Incoherent is a prefect way to describe it!

BR

[bunnyrabbit]

Sorry, Amber32002, in answer to your question, they said he has a social communication disorder and that he towards the more able end of the Autistic Spectrum.