Not sure what to do - 'diagnosis' from strangers. Repeatedly.

[solidgoldbrass]

DS is 8. Today I got chatting to another mum, who said 'He's got Aspergers, hasn't he?' I said I didn't know, we have no official diagnosis, and that he's a little unusual but hey, who isn't? She said that both her sons are on the spectrum and her son (who was with her) had said to her 'That boy's like me, isn't he, Mum?'

I've previously had 'kind' strangers say 'Is he autistic?'. We do have an official DX of 'mild dyspraxia' - his fine motor skills are not brilliant - but as yet his school, who are very good with SN kids, have not actually taken me to one side and suggested we Do Something about any other issues (WRT the dyspraxia, we had a couple of visits to an occupational therapist and a bit of OT in school and in fact his co-ordiation and handwriting etc have improved a lot in the past year or so.

I'm not sure what to do. Whether I should carry on letting DS just be himself (he's clever, very articulate but he is a bit, well, odd, sometimes) or whether I should start trying to get him officially 'labelled'. Both his dad and I are a bit odd, too, though neither of us has any kind of official label to that effect.

That's true for my eldest too, creamteas. The kids that were so nice at age 5, 6, 7... were ignoring him by age 11. He went to secondary school and he's got no mates. The kids are kind to him. They're nice to him. The staff tell me this like I'm supposed to be joyful but the fact that children are kind to my son is a knife through my heart. Be kind to the class hamster. Be mates with a child.

my younger son is very lucky in that, although he is actually the more severely affected of the two, he has got some children who love him to bits. They seek him out, play with him, look out for him. It's not a friendship of equals, they again, are really kind to him. But at least he's not an outsider, like my eldest.

My eldest had to have camhs involvement. and last week he wrote me a letter telling me that he wants to "die in hell"

He's 13

I think it becomes very helpful for secondary school teachers.
They have 30 different kids coming through their door every hour. If a child is struggling with class or group discussion, behaving in unusual(potentially disruptive) ways or not getting on with group work, disorganized and so on -then a teacher will be concerned.
It's great being able to check the sn register and flag this up to the support centre who can put things in place to support the child. If the child's not on the list then a teacher will struggle on trying their own thing to support said child, but there will be no consistency and it will take a lot longer for parents to be made aware of anything.

My ds is 10, he now has one friend and everyone else is kind to him, the staff are his best friends at school really: his anxiety gets worse as he matures. He has his siblings at home, but I fear secondary school next year will be a very lonely and scary place.

Over the years, I've had many people (teachers, friends and even an EP) tell me that my DS is: autistic, has Aspergers, is on the spectrum. We paid to see a Clinical Psychologist who is an expert in Autism and he was certain that he does not. My friend still keeps telling me he's on the spectrum. He does not have the triad of impairments but is definitely a bit quirky. Perhaps he has some autistic traits. It's confusing.

Well, we won't be going privately, that's for sure. There is no money to do so.

A kind of key thing for me is that DS is happy. He either doesn't percieve himself as odd, or doesn't particularly care that he's not quite like other children.

I do find that sometimes telling him to stop talking/leave other people alone works just fine (he is only 8 and I do think that quite a lot of children interrupt conversations and want to talk at tedious length about a particular subject) so maybe just Reminding Him Of Rules will help for the moment.

But I do have a deep discomfort with how very narrow the definition of 'normal' seems to be getting. Surely all kids should be taught to value diversity and accept that A is good at Maths, B is good at running and C is good at making people laugh or whatever. And, given that most of my friends are A Bit Odd (and so are some of their DC) maybe we'll be able to get by without too much trouble.

Yeah, they should be. and if our children could inhabit a world that would treat them as they should be treated, then I would be one very happy woman

sadly, this is not that world. People here are not - generally - understanding or accommodating.

You must do what you think is best, nobody can tell you what that is, you have to, as we all do, feel your way through.

I will tell you though, that happiness at 8 does not mean happiness at 10 or 12 or 14 or whatever age the other children stop looking at them with the innocent all inclusive eyes. I didn't think I'd be facing what I'm now facing with my eldest. It was better when he didn't know or care that he was different. My youngest is at that point and is so happy. He doesn't know that the world looks at him and laughs

Just continue to keep a close eye on your son, watch out for the changes in him - and the changes in his peers that means they move away from him. And be open to acting if a time comes when he isn't happy. and understand that acting at that point means a lag of many months - sometimes years - between your child becoming unhappy and things being done.

god I wish we lived in the world you describe. Where children are universally accepted and integrated, valued and liked. I would sell my soul for a piece of that.

There are some environments were being a bit odd is a positive advantage - most academics lack social skills and are obsessed by detail that to others is irrelevant. The trouble is that to get to these 'safe' environments where diversity is valued most of us have to survive (as high functioners) an incredibly normatively conventional environment in the school. There are those who do not care about friendships or what other people think but there are also those (like my DS) who care very deeply about social relationships and suffer considerable distress that they do not automatically know how to 'do' them. This was not clear when he was 8 but is clear now that he is almost 12.

DS2 is only 6 but what he does care about is that he is frequently misunderstood by his teachers and reprimanded or punished for behaviour that is beyond his control.

BTW most of us are a bit odd (ASD having a genetic component and all) and have survived without a diagnosis and so are bound to have mixed feelings but a label will be attached whether it is odd or naughtly or an equally damaging psychological explanation.

OK, as he is just-turned 8 and in Year 3, I think I will stick to watching the interactions and if I do notice problems developing, even slightly, then take some steps.
I do worry potentially about secondary school, partly because his current school is so very good at including DC and helping them: like I said, three or four of DS' friends have some form of ASD or ADHD; they all came to his birthday party as did half a dozen NT kids, and they all seemed to be playing together and enjoying themselves just fine.

I haven't read all the previous posts but in my opinion, you need to get the ball moving. It can take a long time to get a diagnosis.

As another poster said, the gap between him and his peers may not be huge but it will get wider as he gets older. I understand that the gap starts to become noticeable between 7-8, and difficulties start to appear.

BUT, as his mum, you know him best and need to follow your instincts.

Solidgold: my observations from my own ds and friends' AS kids is that the cracks often start to show in year 4. I think because there is something about being 9 that people start to say 'he should know this by now'. What can be explained away as 'shy' or 'precocious' at 3,4 +5 starts to jar more.

I used to feel very like you about labelling....he doesn't need support so he doesn't need a label. Now I feel differently, I think kids have a right to know who they are, and hf autism is who you are, not something bad you have.

Qoute from my current aspie hero, Jennifer Cooke O'Toole who didn't find out she is an aspie until she was 34. 'If you are reading this and you are an asperkid (ok, cringe, but she's otherwise fab), you have a major thing going for you already. You are SO lucky to already know what kind of mind you have...when I was identified as an Aspie, everything changed. Turned out, I wasn't defective, I was different....Being Aspie isn't good or bad, it just is. I will never be a brunette. I won't ever be male. And I am totally okay with both of those things. I'm also never going to be NT. It's not my normal. And if you are an Asperkid, it's not your normal either.'

I thought that you started this thread because not only you but others have noticed 'problems' developing? It really doesn't matter if you call hand-flapping, interrupting, constant talking etc 'problems' or 'odd'. Whatever word you use is an attempt to capture/explain an independently existing reality.
If not now... when?

KOKO: Well, when he seems to be getting distressed or suffering, or people start complaining about him or being angry with him. His behaviour's being commented on but not in a negative way, at least not yet. Maybe it never will be.

'His behaviour's being commented on but not in a negative way, at least not yet. Maybe it never will be.'

SGB, the decision is yours as his parent, and no one here is trying to force you to do anything you are uncomfortable with. I hope his life is easy, that he has friends who treat him as equal and that he doesn't encounter any of the crap that my son and his Aspie mate have gone through.
But from my experience as a parent and as a teacher, it is highly unlikely that he will continue to be himself without negative responses and harsh encounters from the world to his differences. Especially as he gets older.
Just keep an open mind about what the point of a dx is, and how it might help rather than segregate him.

Could it be that he just has some autistic traits? My son cried when picked up as a baby, loved spinning a particular toy, interrupts, dominates conversations, can monologue to strangers about the GWR, comes across as odd, has been bullied for being weird BUT, he does not have Aspergers or Autism. He has a good understanding of the subtleties of language, doesn't take things literally, understands the emotions of others (perhaps not when they are bored by the monologue but definitely if they are upset or cross), has deep interests but doesn't obsess to a debilitating degree, he loves a change in routine, rarely gets stressed, etc. He has friends who all tend to be slightly off centre. He has dyslexia and an incredible memory. Do they have to be one thing or another? Tony Attwood talks of a shadow condition of Aspergers and many on here have talked about siblings with autistic traits but not the complete triad of impairments.

Niceweather - the problem with autistic traits but not enough for a diagnosis is that this is fine for the parents, but in school this may be translated as there's "nothing wrong" with your child, he's just "lazy, disorganised, weird, stupid, infuriating, insensitive, boring, obsessional, a daydreamer, messy, clumsy, his own worst enemy, clueless, a magnet for bullies, inclined to make irritating noises and disrupt the class unnecessarily" etc.... and that his parents are just making up random symptoms to excuse their child's unacceptable behaviour rather than facing up to the fact he has no manners and isn't pulling his finger out at school. And even if you have a great school where your differences are understood, you still need to understand your differences yourself and have some kind of self-awareness, which people with autistic traits may find it difficult to develop.

So, whilst in reality it may be more accurate to say your child is not a clear fit for the whole triad of impairments, or is not clearly dyspraxic, or not clearly anything else but is a strong mix of all sorts of things without having enough of the right things to plump for the one diagnosis, it isn't necessarily more helpful IF your child's impairments are sufficient to cause them genuine difficulties at school. At least with a diagnosis you have an official description of your child as being in need of extra understanding and support by virtue of their label, not just parental opinion, and the devil is in the detail: if a school READS any reports you have on your child, which frankly is far more likely to happen if a diagnosis was reached at the end of all the analysis, then they will know in which respects he has strong autistic traits and in which he can actually function pretty normally.

My DS is deafblind etc, the number of people (some friends) who have said are you sure he can't see/hear I know he is listening/looking at me. I have got so pissed off with these stupid comments I have suggested they sit in the outpatients department and diagnose our children as they came through the door, it would save us bothering the consultants!! And look at the money they would save the NHS (no glasses,hearing aids and no cochlea inplants ?40,000)
Sorry don't mean to sound trite but knowalls drive me potty.

likemysleep,your posts are truly brilliant about this.I would echo everyone here who advises getting your ds assessed.It will be worth its weight in gold in the longrun.Also whoever said that yr 4 is when the signs start to become more apparent is bang on-my ds,now 12,never had bad behaviour/meltdowns either but does indeed have Aspergers and the diagnosis is helping him access much support in secondary school.I cant even imagine how unjust it would be for him to now be in secondary school (,struggling along forgetting things,hating the noise,being teased for talking about his obsessions,losing concentration etc ) without a diagnosis.Someone else also mentioned anxiety and I too agree that anxiety rears its ugly head more and more as these kids get older.
Please get the ball rolling for your sons sake-it can take a long time and if there truly is no problem then he wont get a diagnosis.They dont just diagnose kids for the sake of it..
Again,hats off to the wonderful posts from ilikemysleep.Brilliance!

Oops,have just looked again and of course,unsurprisingly,the poster who said that yr 4 is often when things become apparent,is indeed ilikemysleep.

SolidGoldBrass

There is no harm in seeking assessment for your DS. If he does get a dx, it will not be tattooed on his forehead or hoisted above his head in neon. If he doesn't get a diagnosis, he will not be scarred by the assessment process. You really have nothing to lose.

He may be happy now. He may be less happy later on. Wouldn't it be sensible to seek professional opinions now, when you think he is coping, than trying to do it later when he is not? Of course he may always be coping and happy - but nobody can know for sure. Personally I would rather know, and be able to let anyone relevant know there is a diagnosis, than wonder for years - and maybe wish I had done it sooner.

It took eight months to my DS to be diagnosed; others take a lot longer. Why would you hold back when it could potentially be detrimental to your DS in the future? Especially when seeking professional advice definitely won't?

Thanks Rabbitstew, I hear where you are coming from and we have in fact been a victim of this ourselves. DS had to leave Scouts because of bullying - and was even blamed for this because "he didn't know when to shut up" and "didn't get the banter". He was also bullied at school for being weird but it was dealt with successfully by school. School is ok at the moment but some local lads mock him. Perhaps there should be more recognition of "autistic traits" as an issue. Our assessment report says DS does not have Aspergers Syndrome and goes on to explain why he doesn't. I know children who do and I understand that they have further difficulties that my son does not.

I think that's the problem, Niceweather. Everything has got a bit messy - I am sure there are psychologists out there who will diagnose where others wouldn't because they see how much help is needed and perceive this to be the only way to help, because a child's difficulties are clearly sufficient to NEED help, and there are others who do not like giving out labels and think this should only be done where it is really obvious that the label is 100% correct in every way. The latter may be morally right, but I don't think they understand what they are really doing to the children they then send back into school like that - because their words of wisdom in their lengthy reports will go unlistened to if the conclusion is that they can't diagnose anything. Then, of course, in the US, you have a whole array of extra diagnoses which no-one seems to contemplate or take seriously in this country - eg PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified). I have sympathy both for those who don't like medicalising everything and those who think more people would be helped if we could just look at the practical realities. The fact is, some people may be a bit weird but cope OK and others have such a selection of oddities that they will NOT be OK unless outsiders are more or less forced to attempt a little bit more understanding. Having the triad of impairments is not the only way to become one of those people who will not thrive in life without a bit of extra support and understanding.