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'Lots of Aspergers traits but not enough for a diagnosis.' I could really do with some advice.

(30 Posts)
verityjones Thu 20-Jan-11 10:55:58

Ok, background
DS is 7yrs. I've always suspected possible ASD tendencies but DH always told me it was in my head. As a baby, DS had major manic episodes after gluten and after testing at Sunderland, leaky gut was confirmed (thanks MN)
Major improvement after this but still major social issues and strange reactions to dressing up or nursery nativity. Also slight dyspraxic tendencies (can't ride a bike, poor pencil control) No speech delay and a very bright boy. Doesn't like change or going somewhere new or to parties etc.

Now in Y2 and in the last year we have had 2 private assessments (one was a guy recommended on here). Both has said yes to traits. However, the woman we saw said yes to lots of traits but not on the spectrum and the guy said yes to lots of traits and on the spectrum but not far enough along to get a diagnosis.

In fact, he contradicted her as he said there was no such thing as 'just off the spectrum'. He said if your not autistic, you're not autistic. She said we all have traits and DS just has more.

So, what the guy said was that if you imagine ASD to be a scale of 1-100, you may get a diagnosis around 10 and DS is around 5 or 6. I feel relieved that it's not all in my head but where to go from here? How can I support him socially? I looked at the Atwwood book but a lot of it isn't relevant to DS. Is there a book or anything with strategies to help very mildly affected kids?

He copes with MS school but it exceptionally anxious in the environment. How can I help him with this? I have 3 children (2 girls younger than him) and we are all exhausted from his tantrums which always happen within an hour of finishing school and are almost like a meltdown. sad

Sorry if this is a bit on an essay. I'm just looking for a point in the right direction. Thank you. smile

verityjones Thu 20-Jan-11 11:29:16

bump

AttilaTheMeerkat Thu 20-Jan-11 11:35:05

Hi verity,

Have you recently met with the SENCO to discuss your son?. If so what was this person's response?.

With regards to his schooling I would now seriously consider the process of getting your DS a statement from the LEA. You do not need a diagnosis nor school's permission to do this.

Have a look at IPSEA's website re the statementing process; there are model letters you can use to write to the LEA www.ipsea.org.uk

Make the application yourself, schools can sit on such things for ages without doing anything. Also you can appeal the LEA's decision in the event the LEA say no, school cannot do this.

He should not have to cope in school, coping is not ideal at all. He having problems at home after school is a result of internalising all his frustrations at school. His needs are not currently being met by school and as a result he is being affected to his detriment and will also affect learning.

Statements are not only for academic needs but for social and communication needs too.

You are your child's best - and only - advocate. Never forget that. You are the best placed person to fight for what he needs because frankly no-one else will do this for you.

BTW your DH deserves a kick in the pants for saying it was all in your head. Your gut instinct has ultimately proved correct and you should take due credit for seeking specialist help. Many men do go into denial because they the poor souls cannot bear the truth. I would say he was in denial but he did himself a huge disservice to you and your DS by uttering such nonsense. I hope he apologised profusely.

IndigoBell Thu 20-Jan-11 11:35:32

TBH you wouldn't really get any support with a dx either. So just keep on researching ASD and implement all the suggestions you can find that seem like they might help.

Also talk to the SENCO and see if there is anything more they can do to help him at school. He does not need a dx to be supported at school (but may need one to get help from the ASD team).

Sounds like he is absolutely exhausted after school. Just try everything and see what helps
- feeding him straight away
- getting him to do exercise (like trampolining) straight away
- getting him to have 'quite time' straight away
- letting him go on the computer straight away
- cutting out X from his diet
- giving him Omega Fish Oil

etc,etc,etc

You can happily spend the rest of your life doing diff experiments and finding out what improves him and what doesn't....

Ineedalife Thu 20-Jan-11 11:45:38

Great advice from indigo and attila, just to add I have Dd3 who is 8 and we don't know if she will get a Dx or not. She has had loads of assessments which seem to show her as borderline for quite a few issues.

She copes at school by working hard and keeping her head down. She isn't able to communicate emotional issues at school so bottles them up until she gets home.

We find,walking home from school, not trying to talk to her too much, giving her space to wind down, allowing her to choose what she wants to do after school and providing a snack more or less as soon as she come out of school has made our life much less stress full.

It must be difficult with younger ones around[I only have much bigger ones]. Is there any way he could have some time alone when he comes home? Doing whatever he likes to do, the school day is very long and stressful.

The best piece of advice I have been given lately is to treat her as if she does have an ASD even without a Dx, because if the strategies work for her then why not use themsmile.

Good lucksmile

verityjones Thu 20-Jan-11 11:49:40

Thank you to both of you! smile

I will look into a statement but was wary of labelling him because he is so mild and I wouldn't want people to make assumptions about him. blushI have voiced concerns to the SENCo who had a chat with the teacher and said they didn't think there was anything wrong with him. Again, this is because he is at a level where he is aware of what he should be doing and tries really hard to fit in. He told me the other day that he laughs when people tell jokes because he knows he should.

One of the absolute worse things is that because he's at the 'milder' end of the scale he is so aware that he is different. Also, now that he's in Y2, all the boys are maturing a little and off playing football. He is less mature than my 5yr old DD1 and cannot cope with the football stuff at all so he is becoming more isolated. I am so sad because I know this gap will only widen. He is very anxious but also very sensitive and often cries at bedtime because he wants to be like the other boys. sad

I will look at what we can do to lessen the after school meltdown.

verityjones Thu 20-Jan-11 11:52:13

Thanks you also, ineedalife. smile

For us, it's just a matter of finding out about those strategies. Is there a book which is specifically written for parents of children 'just' on the spectrum?

I will try a quiet space and food straight after coming in.

IndigoBell Thu 20-Jan-11 11:53:47

Also talk to the school about how he can be better supported at playtime if he isn't coping then.

Ineedalife Thu 20-Jan-11 11:56:20

No I don't think so, ask anything you need to know on here. There are some seriously knowledgable/experienced people on here.

You have come to the right placesmile

AttilaTheMeerkat Thu 20-Jan-11 12:02:08

"I will look into a statement but was wary of labelling him because he is so mild and I wouldn't want people to make assumptions about him. I have voiced concerns to the SENCo who had a chat with the teacher and said they didn't think there was anything wrong with him. Again, this is because he is at a level where he is aware of what he should be doing and tries really hard to fit in. He told me the other day that he laughs when people tell jokes because he knows he should".

Hi Verity

re the above comment:-

Please do not worry about getting him "labelled". A "label" should be seen as a signpost to getting him more help.

A statement won't label him at all. My son has a statement and I don't regard that document as labelling him. It has got his needs met!!. My number 1 priority is to get his needs met.

Your only concern here is your son - you really do not want to waste time thinking about what others are perhaps assuming. Its a waste of energy.

A statement can help him at school with his additional support needs. He is being failed now by school, they do not know how to help him and they don't have any fresh ideas. Both SENCO and his class teacher would not recognise AS or ASD even if presented with a clear cut case; these people do not have indepth knowledge of ASD as SEN is not taught in any depth at teacher training college. They have both done you a big disservice here in saying that they don't think thers's anything wrong with him. How would they know; they are not qualified at all to make such pronouncements in the first place!!!.

I would therefore go all out to get him a Statement asap; certainly do not leave this before he gets to secondary school because that day will surely come. Many children on the autistic spectrum can suffer badly at secondary and not cope because their needs do not get met there. A statement is a big help in pre-empting such issues before he arrives. It will make the school take notice.

verityjones Thu 20-Jan-11 12:24:57

Thanks again. I will have a good look at the statementing process. I guess I also have concern that the two 'experts' seemed to fundamentally disagree so maybe he isn't clear cut even to those who deal with such things every day. Yet, strangely, I have always known. confused

The first phyc we saw for assessment said lots of traits but that DS was not autistic. The guy we saw for the second assessment said he was on the spectrum but would be unlikely to get a diagnosis because he was 'just on'. Their fundamental disagreement seemed to be that she thought we all have traits and he was 'just off' and he said this was totally wrong and that there was no such thing as 'just off'. He didn't believe it was a continuum. He said there was a vast difference between an NT child with a couple of traits that can be associated with autism and even a very mildly affected ASD child like DS.

I guess this has all just confused me. However, I know many parents are mortified at the thought of an ASD diagnosis and yet, because he is 7 and I feel I have always known I feel somehow relieved to know that its not all in my head. DH still doesn't believe it tbh especially because the 2 expects cannot even agree. At the moment I have just decided to look at it as if he has X & Y difficulties and regardless of what is causing them, I need to help him.

verityjones Thu 20-Jan-11 16:06:55

Just spoken to class teacher again and made an appointment to see the Senco. Class teacher described DS as 'just shy and awkward'. This is true (apart from the just bit) but it still hurts to hear someone else say it.

His school is an academically selective independent school. For James I felt I had no choice because our catchment comp is huge with an iffy reputation and I just know he'll drown there. Although he's only 7yrs, I know he'd never pass the interview bit of the 11+ even though I'm sure he'd sail the academic bit so it was a case of getting him in before they notice the difference. blush

As it happens, they haven't noticed much at all but he does thrive on the academic side of school. As long as he is never wrong wink

Sorry if I'm rambling, it just helps to write it all down. smile

tabulahrasa Thu 20-Jan-11 16:25:55

Am I understanding it right that you've had two private assessments but no NHS ones?

verityjones Thu 20-Jan-11 16:49:22

Hiya, yes, two private assessments and no NHS ones. The second assessment was done by someone recommended on here. Both of them are recommended by the NAS.

Private for 2 reasons. Firstly, I wasn't to be sure it wasn't in my head before I mentioned it to school and secondly because DS is at an indie school and it's not so easy to get a referral.

Should I now see the GP and ask for a referral? Would the GP listen as most people wouldn't notice anything wrong on first meeting DS. Thanks

tabulahrasa Thu 20-Jan-11 17:05:01

oh it wasn't a judgmental question, just wondering before I started spraffling and it wasn't relevant was all, lol

My experience with the NHS is that they're big believers in waiting and seeing - so if they saw traits in an assessment then they'd recall him and keep assessing him as he got older rather than just saying, no. You still might not get a diagnosis anytime soon, but they'd not ignore traits either - they tend to keep an eye on children as they get olderand see what happens.

If he's already having issues about school at 7, I honestly can't see it getting any better, in fact my experience is that it gets worse. What's mild at 7 isn't so mild at 12 if you see what I mean - take the social side of things, what's ok at 4 is noticeably off by 7 and can't be ignored at all by the time they're in double figures because issues like that don't just magically resolve themselves and they become more noticeable as they get older.

That sounds really negative, I don't mean nothing at all ever changes even if things are being done to help, I just mean I find that traits seem worse the older the child is because the peers they're being compared to have changed.

I doubt your GP would ignore you btw, a lot of people with Asperger's are pretty good at not being noticed, lol.

IndigoBell Thu 20-Jan-11 17:37:35

Don't ask your GP what they think. Tell them you need a referral to a pead because your DS is showing all the signs of ASD.

And don't even take your DS to the appt.

The GP knows nothing about ASD - not even enough to know if you need a referral. All they know is who to refer you to.

Good luck

verityjones Thu 20-Jan-11 17:57:39

Thank you both. Tabulahrasa, you post really made me sob. sad Not because you were mean or rude but because you are right and what I see as mild now at 7 is going to be far less mild at 12yrs. The gap is only going to get wider and his problems more noticable. It just breaks my heart. sad

Indigo, I will go to the GP and ask for a referral. Should I ask to see a paed? The assessments were carried out by clinical psycologists btw.

tinks5678 Thu 20-Jan-11 18:03:32

My 14 Year old daughter has high functioning autism. school has always been very difficult for her.

The pattern you describe with the meltdowns reminds me a lot of my daughter. What works for my daughter presently is a daily meeting with a member of staff so that she can "offload" all of the pressure that has built up over the day.... she gets it off her chest before she leaves school.

Perhaps you could arrange a similar thing at the end of the school day?... This might help your son/daughter quash anxieties/misunderstandings/worries that he/she might be bringing home from her school day?

Also, instead of going straight home maybe go somewhere else for half an hour? park? It might break the cycle? Also i remember telling my daughter that any anger and aggression had to be left at the front door and not taken "inside the house"..
Hope i was of some help....

tinks5678 Thu 20-Jan-11 18:10:50

Oh and keep your chin up!! Everybody in this world is an individual, no 2 people are the same!!

Your son/daughter may be a handful now and especially as they go through puberty and young adulthood BUT that doesn't mean that he/she will not have a wonderful and full and rewarding life!!

If we are going to be honest about it, every child has their phases and some are highly sociable and others are very introverted...
Please stay positive....

tabulahrasa Thu 20-Jan-11 18:12:43

sorry sad

it's just that my son was about that age when he was first sent for assessment and at the time I thought well he's a bit quirky, but he's not that bad.

What I didn't realise is the stuff that was a bit quirky didn't really change as he got older.

On the plus side though - he's nearly 15 and we're in about the best place we've ever been, he's doing pretty well at school and I can kind of almost imagine him as an adult now and well he'll need support from me for a lot longer than my daughter will, but fingers crossed not forever.

A lot of his problems are caused by having to get through the school system - once that's done with I think he'll do much better.

tinks5678 Thu 20-Jan-11 18:20:22

Hi tabulahrasa, My daughter is 15 in march. She is doing better right now that she has for the whole of high school. I agree that a lot of the difficulties for her are school based and personally I am looking forward to when she has finished school.... and she will then be able to feel in charge of her own destiny.

verityjones Thu 20-Jan-11 18:32:29

Oh don't be sorry. You were very helpful. It's just the raw realisation of what's to come that suddenly hit me. I can see how the vast majority of people would have barely noticed his difficulties at 4yrs and now those same people see him as 'quirky' so there's a definite shift as their own kids have matured and DS hasn't.

I know there are lots of disadvantages of having put him in an independent school and that help (should he need it) will be harder to come by. I'm just hoping that the small class sizes are of benefit to him and the avoidance of the 'one size fits all' comprehensive system.

I am convinced (maybe naively) that he will do ok in life and be reasonably independent. It's just getting him through school that worries me.

Thanks again

Magicmayhem Thu 20-Jan-11 18:35:45

my DD is now 14 and camhs told us she had both dyspraxia and aspergers and they needed to see her in school to see which was most dominant. Upon seeing her at school they decided that her problems were down to her dyspraxia more, so no diagnosis of asd no support.

nothing changed, 14 years on she was retested by the CAT team (well a questionaire) and I was told to get a diagnosis you had to score above 132, DD scored 131...

DD also had similar meltdowns, or wobblers as we called them, she still has terrible tantrams now as she can't express herself or articulate her feelings.

Have you thought about joining the Autistic society?, as meeting parents with children with similar difficutlies could really help.

trust your judgement, because if you don't fight for him... no one else will X

Magicmayhem Thu 20-Jan-11 18:40:45

opps nothing changed, 4 years on ....

rosiemca Thu 20-Jan-11 21:41:16

"Tabulahrasa, you post really made me sob. Not because you were mean or rude but because you are right and what I see as mild now at 7 is going to be far less mild at 12yrs. The gap is only going to get wider and his problems more noticable. It just breaks my heart."

Hi I just want to say that AS behaviour goes through peaks and troughs. 8 years is a notoriously difficult time for boys. My 14 yr old DS has had a diagnosis of Aspergers since he was 3 years old but is not "severe" enough to get a statement. He has always been in mainstream school and has always has a meltdown when he comes home. This is just his way of processing all the information he deals with during the day - schools are just very noisy, busy places and there is almost nowhere for an AS person to hide from it.

DS has always seemed "odd" and I worried about it for years. It made me ill. However his classmates have always accepted him for who he is because they know no different. This year they elected him school council rep - I cried.

I guess what I'm trying to say is please, please enjoy your son for who he is. All the professionals have an academic interest in him - you LOVE him. Nothing will change him, but try all and any techniques to make family life easier. The NAS are a godsend - join them.

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