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My son had Aspergers probably but they wont test him??

(21 Posts)
mysonhasaspergers Wed 22-Feb-17 22:10:14

I'm really confused, I've had concerns about my son since he was 2. We have been back and forth the paediatrician and she suspects he has Aspergers, but there's no point doing anything about it until he starts school. The SALT thinks the same thing, probably Aspergers but not point doing anything.

Is that the usual approach? Seems silly to me not to help him before things become worse?!

JamDonutsRule Wed 22-Feb-17 23:17:47

Yes, it's quite a common approach in the NHS. In fact, many people are told by doctors they can't diagnose until later, when actually they could but don't have the resources to.

Privately they will diagnose from 18 months.

How severely affected is your DC? Mine is mildly and in hindsight the diagnosis was pointless as there isn't any useful help!

mysonhasaspergers Thu 23-Feb-17 19:45:19

Thanks JamDonutsRule, to me he has a few quirky aspects of his behaviour but as first glance to others I don't think it's too noticeable. The problem comes mainly in talking to other children, his sensory issues we seem to have sorted ourselves / he's grown out of.

My biggest worries are complete aversion to any group activity, he will NOT sit on the mat at circle time in pre school.

He can not share some things, sets of things; so sharing a pencil pot in school - I imagine he will throw the pot on the floor if he has to share one.

He also can't initiative play or sustain conversations, I imagine he's not going to be good at making friends in reception which worries me a lot as he defiantly notices he's not "in" on things sad

Would a private diagnoses mean anything? Can the school actually help him anyway? He apparently wouldn't get an EHCP

FrayedHem Thu 23-Feb-17 21:28:38

That wasn't my experience - DS1 (now 11) was dx aged 3 and the diagnostic team said his difficulties presented in quite a subtle way and in years gone by he wouldn't have been diagnosed until 7. If you're not happy (and I wouldn't be) I would push back and see if you can get a full diagnosis assessment. There's little point in waiting for some kind of a crisis if there is enough there for 2 professionals to consider he may have ASD.

mysonhasaspergers Thu 23-Feb-17 21:52:05

I was really quite firm; the SALT was really arsey about my insistence she visits him at pre school - but before she'd even taken another breath she was telling me he'd be discharged off her case load right after the visit as she has others who need much more support hmm.

But she said she agreed with the paediatrician that it's best to wait as he'd get, "more from the test in school". I thought early intervention was really important? Argh, I hate this system, it's so confusing and unclear sad

FrayedHem Thu 23-Feb-17 22:29:25

Do you know what test they are talking about? The only option is can think of is putting in a written complaint but I could understand if you don't want to do that.

Is he due to start school in September?

mysonhasaspergers Thu 23-Feb-17 23:31:13

Yes, he starts Sep 2017; I suppose we are quite lucky in a way that he is an October baby, so he is 4 already, but not in school. I'm a bit worried abut the complaint route, I'm not really a complainer and we might have to access the SALT especially in the future sad Paying for a private SALT is an option if it will get us anywhere though.

They both kept saying assessment, to be honest medical people scare and intimidate me and I didn't think to ask what type sad but I think they were referring to the ADOS test, I think the SALT even said ADOS test, but I'm not 100% sure.

So far he's had two SALT assessments type things where they get him to look at pictures and they ask him questions and the paediatrician has asked me a series of questions about him, I think that was a 3Di test?

FrayedHem Thu 23-Feb-17 23:48:10

I'd be hesitant too about complaining - so I do get it. IME SALT access for school age children can be pretty tricky to get - the criteria for who they will see tends to narrow quite significantly (in our area anyway). DS1 was dx with ASD at 3 and discharged from SALT at then end of reception. I was o.k. with that though, as the input from his Specialist Teacher was more relevant. Have the SALT or paediatrican given you any written reports which detail his difficulties?

DS1 had the ADOS and it has different modules depending on the child's age/abilities. Some of it does depend on the skill/experience of the professional involved in performing it so it may be the SALT and Paediatrician feel he is unlikely to be dx. Was the paediatrician you saw the one that would be part of the dx team? Here you tend to see a community paediatrician first who will then refer on to the assessment team and it's usually in joint discussion with the SALT, though doesn't have to be.

I think when you know what school he is going to, I would get in touch with the SENCo and see how they respond to what the SALT & Paediatrician have said. I know it's a scary time, but there is vary likely going to be other children starting school who need support in all kinds of different ways.

FrayedHem Fri 24-Feb-17 00:21:30

An alternative to a complaint would be to write in and request clarification. Ask them to clarify why they will not refer for an assessment at this time, as you are still confused as they were in agreement that DS was experiencing difficulties and may possible be on the spectrum. You are concerned that waiting until he starts school will delay him getting support he needs. Or something like that?

mysonhasaspergers Fri 24-Feb-17 00:27:20

Thanks so much for all the help Frayed Hem, we've only seen a community paediatrician so far, we've seen her a fair few times, maybe 6 times now? The paediatrician doesn't ever really talk to my little boy, mainly to me? I don't know if she would be part of the DX team TBH, how would I find that out?

SALT has given me a report, but it's not very accurate and quite vague; the first one basically said "yeh all seems fine come back if any problems", we went back 5 months later so they will be giving me a new one soon.

The paediatrician just sends me a summary of what we talk about when we are there, so for e.g. one time sent me a letter saying soon she will send me a letter for an appointment date for the 3di test.

If they din't think he would be DX why do they keep saying he "probably has" aspergers? I think he might have Semantic-pragmatic Disorder? But I'm obviously no expert but have spent HOURS looking into ways we can help him. Last year he couldn't even brush his teeth or wash his hair but thankfully we have found some strategies that help. It seems to be quite small specific things now.

He calls everything he, he refers to himself in the third person, he gets his sentences all confused so he might want to go to the park, but he says he doesn't.

He says no to everything if you ask a question - even, "do you want a biscuit?". He wont engage in circle time activities, he would rather skip lunch and dinner at pre school so he can play with he toys by himself, he has a literal quite formal way of talking "would you like to join me?" is something he says a lot. But before he echoed a lot of phrases. It's like he learnt words before he learnt their meaning?

He can't remember names and he maybe can't remember features either? For example at a baby group he asked me if another girl 14 month old baby was his 7 month old brother. This has happened a few times. When I say it's not his brother he asks, "is he pretending to be x (his brother)"?

He can't play any other game than chase, he doesn't get that the other children aren't playing chase when he steals their toys and he legs it. He does;t differentiate between negative and positive play experiences, unless the other child is being physical.

He talks non stop, but not with others, mainly AT them and his play is rigid and he hates it if you others get involved. If for example if I attempt to pick up a dinosaur and plays with him he just takes it off me and says "that enough now mummy". He has so much to say he sometimes makes up words or replaces them with other random word or sometimes just noise babble. For example at the pool there were goggles on the floor and he asked, "whose is that haircut?" pointing at the goggles?!

Sorry, gone off on one a bit there! He's very good at "what this, what's that" mainly because we've spent years teaching him point and answer language but he doesn't have much free speech as such. I think that's why he does quite well on the SALT tests. But his problem seem to be quite intricate and so far the tests haven't really touched on it properly. sad

FrayedHem Fri 24-Feb-17 01:08:21

I would have a dig around google/your nhs website and see if you can find a children's development clinic in your NHS area. Here you see a community paediatrician at a local clinic, but they refer on to the CDC and the ADOS is done by a specialist SALT and OT. The consultant paediatrician takes a full history, confers with the ADOS team and then you get the dx (or not).

Community paediatrician's do tend speak more to parents but the one I see for DS3 does always make a point of engaging him in some play to do a mini assessment. The first one I saw for DS1 didn't speak to him at all and told me he wasn't autistic as he waved bye at her(!) so it can vary. (Fortunately she was replaced and the next one referred us on).

It is baffling that they are saying it may be Asperger's but saying to wait until he starts school. ADOS is designed to pick up on the issues you've mentioned for your DS. Waiting lists can be long so it seems that they are just intent on delaying the inevitable which is unfair on you and your DS.

I would have one last push back at them particularly if either report comes through saying you agreed that waiting until he starts school was the best approach.

Marshmallow09er Fri 24-Feb-17 08:16:58

We had similar - DS was under his developmental paediatrician from 18 months who kept saying wait and see - it was fairly obvious he had ASD but we didn't get a 'formal' diagnosis until he was 4 and at school. We just kept going to see her every 6 months and really it was when school completed a questionnaire saying they saw the same as what we saw that we finally got a diagnosis. Looking back I don't know why I just went along with it, I didn't know any differently then.
NHS Salt were fairly rubbish too - they saw him as he didn't really speak until he was 3; but as soon as he started he caught up really quickly at which point they discharged him.

tartanterror Fri 24-Feb-17 11:25:52

Sorry - this post got way longer than I expected when I started typing!

What you are saying sounds familiar! I saw signs that DS was different from before age 2. Lots of professionals (teachers/SALT/dietitian etc) also made comments around 3/4 which meant they too thought they saw differences but they were all vague about it, so I was too. I didn't realise that it was up to me to "join the dots" for the diagnosis...... and pretty much for any help he's ever going to get. Once at school they said the differences were too subtle; he is just naughty; implied I was a poor parent; he probably wouldn't get a diagnosis and is too able to qualify for help, that he wouldn't get an EHCP..... blah blah blah. Brace yourself for something similar if your school doesn't have a good learning support dept......

Well after years of other people being vague and prevaricating I decided to act. We had lots of evidence and were “known to service” so within a year DS was diagnosed at 7 and waiting for EHC assessment results....

Remember - you are the only one who knows your DS across all settings and it is up to you gather evidence to support him, and pull others in to help, as no-one else is as motivated!

Random tips I wish I'd known at your stage:

1) Keep records of all discussions with professionals and your observations of your DS. It is your evidence base that will help get a diagnosis and support at school. It will prove issues are longstanding and ongoing.

2) Read up about Aspergers and write down examples of how your DS fits the diagnostic criteria in DSM V and ICD 10. There is a really good checklist in this book which helped me.

3) Although signs of ASD can be seen at 14-15 months, on average families find they need about 3 years worth of evidence before they get a diagnosis. Accept that process and do what you can to speed it up. Ruling our hearing problems is usually one of the very first steps. If your DS is showing signs of hearing/listening problems, and this hasn't been done, then request one. Glue ear/grommets is a common sidetrack which has to be dealt with.

4) If your paed is not willing to diagnose now, ask for a follow up appointment in 12 months time. By then you will have good records and examples (as above) and a term's worth of observations from school……. If your evidence is good, it should make it easy for the paed to say yes! You ideally you want to keep an open referral with your paed over the next few years, as otherwise having to start again with another doctor or CAMHS will slow things down.

5) Your immediate issue is preparing for your DS starting school. Knowing what I know now, I would ask the paed for a letter explaining that your DS is under observation with suspected ASD or something similar, so that you can “manage his transition” to school. It should help get him on "SEN Support" without delay. You can also use the letter to access the school in June/July for extra settling visits, possibly setting up a Provision Map/meeting the SENCO and taking photos of his classroom/teacher (to talk to him over the summer etc). All this is called “scaffolding” by psychologists and it should make things easier for your whole family - it's fine for the professionals to want extra time for diagnosis, but its also fine for you to ask for a little bit of help from them in the meantime while they think about it.

6) Stop talking about your DS' difficulties in front of him. Refuse to do it at NHS/school appointments – you may have to take someone to care for DS while you discuss things with the professionals. I now call to check if I have to bring him ahead of time as mostly they don't want to see him, or 10mins at the start will suffice. This is probably the single best thing you can do to protect your DS' self esteem.

6) Self esteem will protect him in the future from mental health problems so it's really important to consider. Build confidence and be careful what “help” you give. I inadvertantly caused my DS a lot of problems by taking him to an OT about handwriting, getting special pencils etc etc. He felt defective and it made his avoidance worse. Discovering the Magic Link Handwriting method gave him back his confidence and was a really lightbulb moment for me. What aspie's need with most difficult tasks is for them to be broken down into tiny pieces so they can achieve by taking small steps. Think stretched not stressed.

7) Doing an IPSEA Foundation Law course – either in person or online. Best £65 I ever spent and it taught me how to write DS' EHCP application. Wish I had known this before DS started school as it could have saved a lot of heartache. Knowing what should happen doesn't mean it will, but it means you can help the school along in the right direction. Establish a good/friendly working relationship with the school SENCO even if there are times they make you want to scream!

8) Look into Brainwave, a charity which trains parents to deliver therapy. I think it is about £500 but they have grants for low income families. We are going to see them later this year for SALT and OT training. It is a lot cheaper than private and we've found DIY stuff very effective in the past - and certainly better than the complete lack of help offered by our LA and NHS!

Good luck

Thread hijack – if any Mumsnetters can write me a simlar list for an aspie in mainstream primary heading for secondary transition I would be eternally grateful!

Marshmallow09er Fri 24-Feb-17 11:46:03

This is really great advice Tartan. I agree with it all and wish I'd know / done it all myself 4 years ago - maybe we'd be a bit further along in the process than we are now (e.g. with out EHCP which I put off for too long). Hindsight eh.

It's a shame there isn't a way to 'pin' a post on mumsnet SN, like a collection of advice like this for people who visit the boards with similar concerns, as a signpost on how to move forward

tartanterror Fri 24-Feb-17 14:52:19

Thanks marshmallow - that's very kind. It all looks so simple written down in a list like that, but that's taken me 4 years to figure out! Don't think of it as "putting off" the EHCP and consider it more time for evidence gathering! wink

JamDonutsRule Sun 26-Feb-17 14:48:54

Tartan you are a star, what brilliant advice!! I would absolutely follow all this advice OP!!

Just wondering, have you already ruled out affording a private diagnosis? It's usually about £700-£900 as a one off.

Interesting that you wonder if it could be a language disorder. I read it and thought language, up until I read about the rigid thinking with not wanting anyone to join in. Do you also get big tantrums if the routine is changed / something unexpected happens?

mysonhasaspergers Thu 02-Mar-17 19:55:35

Thanks Tartan, that is a beast of a post! So helpful!

JamsDontRule I would be happy to pay for a diagnoses, but doesn't it mean the same as being diagnosed privately? In my head the school etc would be a bit like "yeh yeh, you basically bought this diagnosis". I am quite cynical though, it could be squiffing my POV!

We used to get small tantrums but nothing too big. Biggest tantrums are reserved for sharing. He can share on his terms only it seems. He is much much better now but he still wouldn't ever share a thing from a set.

zzzzz Sun 05-Mar-17 10:06:05

What will diagnosis get your son that he can't get anyway?

Support in school is needs not dx based and you already have more than enough evidence that he has additional needs as he has seen salt/paediatrician etc.

Sharing can be learnt, but will take much more time than a nt child. Make a plan on how to teach it and practice it.

Don't hang around waiting to be told how to help him. Your best guess is probably good and more your ds focused.

user1487801012 Mon 06-Mar-17 17:14:44

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

mysonhasaspergers Mon 13-Mar-17 15:38:00

thanks zzzz, I think in school he might need more 1-1 help. He can share, he is actually really good at sharing. But some things he can not share I can model behaviour all day long and it wont help.

I feel like we've helped him as much as we can now, most of the things are small and very specific and only manifest in group situations.

housewifebynamenotnature Tue 14-Mar-17 19:20:58

The NHS trust that dealt with us refused to call it Asperger's, even though that's what my ds has. Annoying, my ds was diagnosed last year at the age of 5.

My DS (who is an Oct baby too) went to three pre-school settings (we moved a lot in two years) and I expressed my concerns at each one. It wasn't until the last setting where they truly 'got' him and realised he wasn't NT. They then got a SP in place and received some extra funding etc. You really have to push these professionals, which is a disgrace but fight and fight hard. I was palmed off by the HV, who didn't want to see my DS but assured me his behaviour was normal for a 4yo. Once the Pre-school were involved, it did help as they were my back up.

My ds saw his paed for the first time in August last year, she suspected ASD but didn't want to diagnose as she said his dx would affect the rest of his life. However, the behaviour worsened when he started school in September 16 and we were having regular meltdowns and violent behaviour at home, so I contacted the paed again and he was diagnosed in November with ASD.

It's painful, but you can disagree with these people. If a diagnosis is important to you, then push hard for it.

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