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A really comprehensive list of what it means to be on the Autistic spectrum

(18 Posts)
Italiangreyhound Thu 12-Feb-15 13:42:55

Can I ask where I may find a really comprehensive list of what it means to be on the Autistic spectrum, please?

LetMeDriveTheBus Thu 12-Feb-15 13:58:34

The national autistic society website is a good starting point flowers

TheSolitaryWanderer Thu 12-Feb-15 14:00:21

No one place, because it's so wide and so varied. Tony Attwood is the go to man for Asperger's, and I have a list that I created to try and explain some symptoms of AS to teachers and others. But every child is different.
You need to do a lot of reading!
Any particular reason why you want a tick list of the whole spectrum?

TheSolitaryWanderer Thu 12-Feb-15 14:01:26

Oh, and the list changes as the child grows up, so what was true at 7 might not be at 17. Or it might.

Italiangreyhound Thu 12-Feb-15 18:49:20

LetMeDriveTheBus thanks, could you tell me where it is on the site, please?

TheSolitaryWanderer thank you, any chance you would be willing to pm your list to me, please?

My dd is 10 so I need to know what is relevant for a ten year old

I would like somewhere to start because the school have said they think my ten year old dd is on the autistic spectrum. I am pretty doubtful of this because the things I would associate with ASD don't really fit with dd. DD is difficult in terms of behaviour, struggles at school (she is working at Year 2-3 level but is in Year 5), struggles with reading, writing, especially spelling and also some maths, she has dyslexia, and she has some behavioural issues. Over the years I have wondered about ODD (Oppositional Defiance Disorder) and also Aspergers, PDA (Pathological Demand Avoidance) and Autistic Spectrum Disorder but when I get information on ASD I feel it is not likely.

I just started looking at ADHD (Attention Deficit Hyperactivity Disorder). This seems to fit dd much better.

I am also thinking that if ADHD affects about 1 in 8 and ASD affects about 1 in 150 then it is (statistically) more likely to be ADHD, isn't it?

I don't have a problem with labels but I do have a problem with dd being wrongly labelled.

I also wonder if she gets a ASD or ADHD diagnosis, or label, will she be entitled to any extra help at all? I am thinking extra teaching, extra time in exams etc etc. I also need to think if a 'label' will help or hurt her.

orangepudding Thu 12-Feb-15 18:58:20

How helpful has the school been? Your DD sounds far behind her peers, has she seen an Ed Pysch?

It's very difficult to get an ASD diagnosis so it's very unlikely your dd would get one if epshe didn't have it.

I personally don't see a ASD or ADHD diagnosis as a label it explains some of my childs behaviours.

Italiangreyhound Thu 12-Feb-15 19:00:07

ADHD affects about 1 in 8 and ASD affects about 1 in 150, those figures are from the USA, I think.

Dear old wickepepdia says of Autism

en.wikipedia.org/wiki/Autism

"As of 2010 the rate of autism is estimated at about 1–2 per 1,000 people worldwide, and it occurs four to five times more often in boys than girls."

So not sure it is 1 in 150! More like one in 650! So pretty unlikely. Then it says "United States (one in 68) are diagnosed with ASD" So I am thoroughly confused how common it is.

DD does have some sensory issues, around clothes. But I can't imagine these are limited to ASD.

I think the woman who assessed her probably did a very quick look and drew some conclusions that were not realistic. She seemed to think dd did not engage with her but dd is a bit shy and only really engages more when she knows people. She has a dyslexia teacher who she has only known a few months, only sees once a week for an hour and she is on very good terms with her, her school and church teachers and, of course, her peers. But she is shy.

Reading about ADHD is pretty scary too but I just want a diagnosis that is realistic. I guess I am scared she will be misdiagnosed because she does not quite seem to fit anywhere.

Italiangreyhound Thu 12-Feb-15 19:05:50

Thank you orangepudding that is reassuring. Sorry I did not mean label in any negative way. I guess my strong feeling is a label or rather a diagnosis is helpful if it is true. If you put salt in a pot marked salt it makes it easier to find. But a wrong diagnosis, or an incorrect label in my words (not talking about your or anyone else's child, just mine) is worse than no diagnosis, e.g. salt marked as sugar could end up on the pancakes!

I guess with the dyslexia the school were reluctant to diagnose and said they did not want to label, so I was very much fed the line 'labelling' was wrong. But I knew at 5 or 6 she was struggling, and she was not diagnosed until 8 (with dyslexia). Knowing their was a reason for her struggles at school really helped.

The naughty behaviour we have it purely at home. At school she is pretty well behaved but finds it very hard to concentrate and this maybe makes her less cooperative just because she may well not know what is expected of her.

fairgame Thu 12-Feb-15 19:10:30

ASD affects about 1 in 100 children in the Uk. I'm not sure about ADHD.
Sensory are not limited to children with ASD at all.
It's very difficult to get a diagnosis of ASD, they will not diagnose unless they are completely sure. ASD is a spectrum and all children with ASD are different. Traits that some children have, others do not but they all have difficulties in 3 main areas called the triad of impairment.
If your DD doesn't fit anywhere diagnostically then she won't get a diagnosis. They don't diagnose the nearest fit, she will either have a condition or she won't.

This is the link to the national autistic society which tells you about autism. It's got about 7 pages so just keep clicking next for the next bit and there will be a list of the main characteristics on about page 4 i think.
www.autism.org.uk/About-autism/Autism-and-Asperger-syndrome-an-introduction/What-is-autism.aspx

Bilberry Thu 12-Feb-15 19:11:54

I would post on the SN children board. There is a lot of people expertise on there including girls with ASD; I understand girls can present differently. If you suspect ASD or ADHD you need to start the diagnostic process by going to your GP and asking for a referral to a developmental paediatrician and/or CAMHS. Not sure if school could also refer to CAMHS. These are medical conditions so need to be diagnosed by doctors. The diagnostic process takes time (often years) and they won't just throw a diagnosis at her. In the meantime, it sounds like she needs additional support in school.

orangepudding Thu 12-Feb-15 19:16:43

My son is similar, he doesn't fit well into a particular diagnosis. He has traits of dyspraxia, ASD and ADHD. His Paed is trying to find which diagnosis will fit him best to get the help he needs.
Thankfully his school are helping based on each of his needs (symptoms) even though he doesn't have a formal diagnosis. This works well as they are not focussing a label but individual needs.

Italiangreyhound Thu 12-Feb-15 19:19:47

Oranepudding you asked How helpful has the school been? Your DD sounds far behind her peers, has she seen an Ed Pysch?

The school were utterly rubbish for a long time. They just told me how badly she was doing and seemed to think we could just make it better. My dd hated homework and this led to massive temper tantrums and rows when we tried to do it. Which has led to us now not doing it hardly at all (juts a bit when we can engage dd in it).

In Year 4 things changed, probably because at the end of Year 3 she saw the Ed Psyche (about 18 months ago) and was assessed. At that assessment she ended up with pretty low scores. Overall Phonological Loop was under 30, Overall Visual Sketchpad was under 15 and Overall Central Executive was under 5 (the numbers being of Percentile rank).

The school put some very targeted interventions in place and dd made progress. I am in touch with a dyslexia charity and they helped with suggestions. They also pointed out to the school that a small group of 2 TAs with six kids although a ratio of 3 to 1 was not as good as actually having 3 kids to 1 TA, because more kids equalled more distractions for DD. Something I would not have known or thought of. I am surprised the school did not.

The school also gave dd a TA to work with who she really hit it off with and worked well with. When I requested she keep that TA (she has only been having a few hours a week with her) in the following year it was not allowed.

It's been a mixed bag and I feel school is getting better. I was naive assuming school were doing their best and as someone with little faith in school generally I did not know what to look for, expect or demand, as time has gone on I have got better at championing dd's cause but for the first few years I accepted DD was struggling. It was the dyslexia charity that convinced me dd was very bright and now the school person who wants to rest for autism seemed to be saying (in our brief conversation) that dd was not that bright, that she was not that engaged or communicative, didn't seem to have a sense of humour (dd is all about the humour but is very shy), that she has a funny walk (which we have had checked independently because of a foot issues and a specialist said a small issue with being overly pliable) and that she should be tested for ASD which has not been mentioned by any SENCO at school before.

It was almost like she was describing another child altogether and yet I know there are challenges for dd and I am almost desperate looking for anything to hang my hat on!

Italiangreyhound Thu 12-Feb-15 19:25:37

Fairgame, Bilbury and orangepudding thank you so much. I have to go out now but will check back later.

I hope I have not offended with my talk of labels, I am in no way thinking of anything than my own thoughts on how to get a handle on all this. For so long have felt it was just dd, she is just like that but sometimes wonder if there is more than just dyslexia.

What the the SN children board? Seperate for SEN but also on mumsnet?

TheSolitaryWanderer Thu 12-Feb-15 19:56:33

The Goose and Carrot is the SN board's pub, drop in and ask and chat and share
More specific questions and fast answers and support happen in SN children. Both are opt in choices on MN, because of past problems with trolling.
I don't need to pm my list, it was on a MN thread long ago. smile

Some people have asked if their child has AS and then gone on to describe behaviour and sensitivities, so I wondered if this might help.
The following is not meant in any way to be professional advice, I'm just a parent with a teen Aspie, but it might help some individuals decide if they want to explore certain issues a little further or ask for guidance from professionals
It is by no means a complete or exhaustive list, and does not cover co-morbid symptoms that may be attached to AS.
And yes, for all the NTs reading, We know that most children do most of these things at some point.

Main characteristics
Difficulties with social relationships.
Not picking up signals and info that NTs take for granted such as facial expressions, intonation and inferred information.

Difficulties with communication.
May speak fluently but take little notice of reactions, may monologue, may not be aware of audience's feelings or reactions.
May be over-precise, formal or literal in speech. Jokes, metaphors, sayings, figurative language may cause total confusion, stress, meltdowns etc.

Difficulties with social imagination, imaginative play and flexible thinking.
This one causes some confusion as people say 'Well, he plays with his lego and makes up stories and has imagination, so...?'
It's the social aspect of imaginative play that can cause difficulties. If the child is in total control of their 'world' and setting the agenda, then they are being imaginative. AS children find it difficult to play when other individuals are involved that have different ideas or who don't perform as expected, unlike a lego or toy figure.
Abstract thinking is another area of difficulty, although the child may learn facts and figures easily, dealing with abstract concepts, without clear outcomes may be a challenge. Subjects like literature, religion and philosophy.

They may also be:
socially awkward and clumsy in social relationships with others
naive and gullible, a good rule of thumb is that many Aspies function at an emotional age 2/3 that of their chronological age.
unaware of how others feel
unable to carry on a 'give and take' conversation
upset by any change in routines and transitions, often undetectable to NTs
literal in speech and understanding
overly sensitive to lights, noise, odours, tastes and tactile sensations again often undetectable by NTs
have fixed interests or obsessions
physically awkward in sports, often those that require simultaneous application of different skills.
Not a team player in any sense.
Possibly
have an unusually accurate memory for details
sleeping or eating issues that cause problems
trouble understanding and processing things they have heard or read
Inappropriate facial expressions or body language
unusual speech patterns, repetitive or irrelevant remarks
stilted, formal speech
overly loud, high or monotonous voice
stims that may involve rocking, fidgeting, joint cracking, humming, pacing...

Hope it's useful.

Italiangreyhound Thu 12-Feb-15 21:43:24

Thanks * TheSolitaryWanderer* very helpful.

What does Both are opt in choices on MN, because of past problems with trolling. how does one opt in?

Thanks again.

Italiangreyhound Thu 12-Feb-15 21:54:05

Where is the SN children board, please?

LetMeDriveTheBus Thu 12-Feb-15 22:22:36

If you go to the main talk page, there's a topic called special needs. Within that are the special needs chat (posts deleted within 3 mths) and the special needs children boards.

Post a query on either of those boards and you'll get good advice. I believe those boards don't come up in "active conversations" unless you opt in, but can be accessed by anyone.

Italiangreyhound Fri 13-Feb-15 01:55:31

Thank you LetMedriveTheBus.

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