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Help... Family members (who see DS once a year) decided to tell me they think DS is autistic

38 replies

BrainSurgeon · 29/07/2015 00:57

I'll try to keep it short.... DS is almost 7 and is a little "different" from all his cousins - shy, not sporty, not too keen on physical contact with people he's not close to. He also has major issues with food (eats very few things, all bland) and gets anxious if alone, can't go to sleep by himself.
He has always had lots of praise from school, and as we recently moved abroad, I went to see the school counselor - child psychologist who looks after new kids and kids with issues - to ask if they think he settled OK and to talk about the anxiety and food issues. I was told DS is doing really well, he doesn't have any issues at all and that I should relax and stop worrying.
We are now visiting family members that we only got to see once a year in the last three years.
Step MIL tells me that she and the rest of the family are talking a lot about DS and they came to the conclusion that he must have autism.
I don't know how to react, I don't know what to do.
Help!...

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Peppasmate · 31/07/2015 08:20

Firstly op I really feel for you & totally appreciate where your coming from.

I've been there with both my boys.

Unless your family are toxic, damaged, narcs I wonder why they would say this to you without the very best of intentions...be it a bit heavy handed!
.
One thing to consider is why is your son anxious? Why does he appear to have attachment issues? The food stuff sounds pretty severe. Don't necessarily think about ASD, address the issues you highlighted because they are slightly unusual for a 7 year old. I've got a son of 7, he's my 5th dc.

I wish you the best of luck.Flowers

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Goldmandra · 30/07/2015 22:34

I have two DDs with AS who were diagnosed at 12 and 7 YO.

Until DD1 was 12, she was, in everybody's opinion, a quiet, very compliant, very academically able, studious, pleasant, polite child who seemed to be happier with her head in books or around horses than with her school mates. Her teachers used to say every parents' evening that they wished they had a class full of children like her.

At 12 she started high school and her world came crashing down. All of her masking and coping strategies were inadequate to deal with the much more challenging environment, she missed a whole year of school and mentally she was in a complete mess for months. She eventually went back to school in year 9 with a statement of SEN and a place in an mainstream autism base attached to her high school. It took a very skilled and experienced psychologist to work out that she had AS and even after diagnosis, so-called ASD specialists in the school loudly questioned her diagnosis.

When I read properly around AS and ASD, a lot of things about DD1's needs and behaviours suddenly made much more sense. With her diagnosis, she also became happier because she realised why she had always felt such an outsider.

Up until that time, I thought you could spot a child with ASD a mile off. I was so wrong. The symptoms can be very subtle in their presentation but that doesn't make them any less disabling as the child gets older and it doesn't mean they need less support.

I soon realised DD2 also had AS and asked for her to see an Ed Psych. The Ed Psych actively ridiculed me for bringing the idea up saying she could see no evidence whatsoever. A few months later, DD2 had a diagnosis and a statement followed a year later by a move to a school with a specialist unit.

I wish someone had pointed me in the direction of reading around ASD when DD1 was 4 and hated birthday parties or when she begged not to be taken on holiday, crying every night to go home. It could have saved her an awful lot of distress when she was thrown in the deep end at high school and then punished for not being able to cope.

Please listen carefully to your family. They may be giving you the power to stop your DS going through the hell my children went through. Read and read about AS and ASD. You never know. They could be right and, if they are, knowing now could be such a precious gift for your DS.

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mugglingalong · 30/07/2015 16:05

Bear in mind too that the relative might have said that the issues might be related to x, y or z and your MIL has interpreted it as he definitely has x. Perhaps also the relative didn't realise the dynamic between you and MIL and thought it would be better from her.

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mugglingalong · 30/07/2015 15:59

Dd has some traits but not enough to have her assessed. Dh is a professional and he will spot signs but he wouldn't be able to say for sure without assessing formally. Your relative might have spotted some signs and wanted to alert you to the possibility. If it is mainly focused around food you could explore whether it might be a sensory issue like sensory processing disorder (which dd does tick lots of boxes for). It can be associated with autism, but can also be present without autism.

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GooseyLoosey · 30/07/2015 15:52

I'll share this with you as it was one of the funniest moments of my life.

When ds (now 12) was younger, he stuck out from his peers like a sore thumb. He was always like a square peg in a round hole. Other parents had clearly talked about this and decided to tell me "he is not really like other children, do you think there might be an issue?"

I didn't think there was, but could see that he had problems fitting in, so in time, ds was assessed for ASD.

The result of the assessment was that he met none of the diagnostic criteria for autism but was found to be profoundly gifted with a very, very high IQ. The Ed pysch said his problems arose from simply not understanding the motivations of his peers nor they of him - which was not unusual in profoundly gifted children.

When the same parent asked if we had had a diagnosis, I told him we had... ds was a genius. Not sure it did much for my popularity at the school gates, but how I loved that moment.

The point of all of this is sometimes difference is just that. There is no pathological reason for it and nothing behind it. Do get things checked out if you perceive a need, but have faith in your view of your son.

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DayLillie · 30/07/2015 15:35

Hi Brainsurgeon - glad you are going for diagnosis. If you can do things early, it is so much better.

We did not have a diagnosis as we did not realise the extent of his problems until a-level and beyond. He is now adult so he is supposed to realise his own problems and get his own diagnosis Hmm so we are just trying to support him in the best way we can.

We though he was clever enough to find his own way round his problems, but that is not the case, because he gives up at the first hurdle.

Diagnosis and understanding has improved immensely over the last 20 years so other people should have a better experience, but I am all for finding out as much as you can, even if it turns out not to be ASD.

My son has always been 'different', but not classically Asperger. He was late talking (3 1/2) which was investigated. A lot of things had to be done in the right order and there were a lot on tantrums but this improved when he started talking and he fitted playgroup very well. I was reassured that he was just a boy and sometimes very clever boys were like this. He was very sociable when young, but struggled with friendships at school. He was slow at learning some things and very quick at others. Some things he would just not do, to an extreme. He did really odd things such as fuck off to the playground when he was out with his school class - they came back without him and hadn't realised until I asked where he was (this was Y5).
He seemed ok at high school, and never caused any problems apart from not doing homework. His GCSE results were not what we would have hoped, but he did not seem to put effort in. One teacher said he gave the impression of being very intelligent and able, but things did not go in. This was just before a-level so a bit late in the day.

I think he is very demand avoidant, has trouble with people, and compensates by passively avoiding the problem. He is really good at that. He does not focus well on tasks and puts all his effort into avoiding them.

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WritingscorpInk · 30/07/2015 14:54

I really sympathise, Brain Surgeon. Been there with my DD and DS It is almost always upsetting when someone says something you don't want to hear. Especially if your relationship with them is anything less than wonderful.

They may be completely wrong, or they may be right. Some of the things you mention can be indicators of autism, or of other issues, or just developmental quirks with nothing to worry about at all. A specialist referral to a multi-disciplinary team is the way to go if you have any serious concerns.

We struggled so much with the process of diagnosis for DD that we didn't diagnose DS until he was 10 and struggling really badly. If there is an issue, working with it earlier improves the outlook for children. I wish I had done it earlier....

If you are uncertain and struggling you might like to read 'A Different Joy: The Parents' Guide to Living Better with Autism, ADHD, Dyslexia and more...' which has lots on whether (or not) to go for diagnosis. Go to //Www.differentjoy.com to find out more.

Help... Family members (who see DS once a year) decided to tell me they think DS is autistic
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Nydj · 30/07/2015 10:52

Firstly, Flowers for you OP, it must have been a real shock to be told something like this from someone who doesn't generally have your best interests at heart.

If your child is on the autistic spectrum, you are doing absolutely the right thing by doing what needs to be done to make him feel comfortable in his environment. Strict parenting does not stop a an autistic child from suffering in certain situations so whatever happens, do carry on with understanding and accommodating your child's needs rather than just forcing him to fit into other people's ideas of what they should be doing.

You may want to look into information about sensory issues to establish if your child has any especially regarding taste, texture etc. a very kind mumsnetter pointed me in the this direction whilst my son was being assessed for being on the autistic spectrum (he is) and the book I read called the out of sync child was really, really helpful in understanding and helping my son - there are probably more updated books on this as I read the book about ten years ago.

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noblegiraffe · 30/07/2015 10:48

There's never going to be a good time to raise concerns about a child.

My DS's teacher asked me to pop in after school once, and said they had concerns about his behaviour and thought he was displaying ASD traits. I had utterly no idea it was coming. I spent a lot of time straight after thinking about how she said it, whether it was her place to say it, whether she could have given me a bit more warning. I was pretty annoyed with her.

I think it's probably a natural response to be annoyed with the person who says they think there might be an issue with your child.

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BrainSurgeon · 30/07/2015 10:37

I spoke to DH about it and we agreed to get him evaluated anyway....

I'm not annoyed with the fact that it was flagged to me, it was the wording and the timing of it... But I suppose it was with good intentions.

Thanks everyone for your input, really appreciate it.

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CordeliaFoxx · 29/07/2015 19:45

Will add he's now 14, and passed through Primary school without anything being picked up. Luckily his high school have been a lot more on the ball.

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CordeliaFoxx · 29/07/2015 19:43

He just showed a lot of traits I recognised in friends DCs who have autism, my DS also used to attend a special speech and language school where a lot of children also had autism.

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noblegiraffe · 29/07/2015 19:09

Don't assume that it would have been flagged up by professionals by now if there was a problem, two students in my most recent Y11 class were diagnosed with ASD at the age of 16, their problems just became more obvious as they got older.

There are certain things you say in your OP which could be a sign of ASD, so rather than being annoyed with your well-meaning relatives, it's probably something worth keeping an eye on. The child psychologist at school has probably seen him even less than they have.

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DoItTooJulia · 29/07/2015 19:07

Do you think there any truth in what they think?

If it is coming from a good place, and you think its not out of the tealms of possibility, I'd be tempted to think about following it up when you're home even if it's just to put your mind at rest.

What do you think is going on with the food issues?

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OopNorth · 29/07/2015 19:04

Someone not as close to your son may have seen something that you are too close to see

I meant to say!

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OopNorth · 29/07/2015 19:00

DS 12 is in the process of being diagnosed with Aspergers. With hindsight there were lots of signs there when he was younger, but nothing really till he was Y5/6. CAMHS have said that younger children are more forgiving of lack of social skills (with DS it was talking at you rather than with you, talking at length about certain few subjects, not having any friends), but then as he got older children didn't "get" him and want to be around him.
then when he moved to senior school he really couldn't cope with the transition so it all came to light.
He's intelligent and got all 5s in SATs so I didn't think there could be a "problem".

With hindsight I was just too close to him and thought he was my lovely quirky son (still do obvs!) but I wish someone had said something to me, because he's had a really tough time in Y7 and so much could have been done to help him.

Sorry that doesn't really answer your OP, but if someone not a close to your son may have seen something that you are too close to I guess I'm trying to say.

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BrainSurgeon · 29/07/2015 18:28

How did you figure it out Cornelia, if I may ask?

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CordeliaFoxx · 29/07/2015 18:18

I raised concerns about my DN having autism a couple years ago and DSis instantly dismissed it, he's now going through the system and has been diagnosed.

I'm not saying your family are right, but sometimes someone who's not so close can see things differently.

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BrainSurgeon · 29/07/2015 17:57

That sounds scary DayLillie.... So has your DS been diagnosed with ASD?
If you look retrospectively do you think there were signs you didn't recognize?
If you don't mind can we maybe have a chat on pm?

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GingerDoodle · 29/07/2015 17:18

My father helpfully suggested DD had issues after i had to cart her out of a restaurant screaming.

She's not yet 3, had drunk 2 glasses of neat lemonade (which I know she is sensitive too), and not napped. Hell of course she was hyper. Not pleasant and not a good moment.

He didn't mean it maliciously but that did not stop me feeling very hurt by it.

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DayLillie · 29/07/2015 12:32

My DS had no obvious learning difficulties and everyone said he was fine, and just a boy, lazy, etc. (and of course, was told I need to be more assertive with him and parent properly. ) But he did have problems later in school and did not get any of the results that we were lead to believe he would. It is a complicated thing, and I would only trust the judgement of an expert, if you can get to see one.

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stillstandingatthebusstop · 29/07/2015 12:28

I think you'd know Brain. My son has autism and, although he had a very complicated start in life, I knew something wasn't right with him. I wouldn't worry about what your in-laws have said.

And . . DS3 has autism but he's a brilliant kid (teenager these days). Grin

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BrainSurgeon · 29/07/2015 12:18

DS has no learning difficulties whatsoever, reached all developmental milestones OK and none of his teachers (all at very good schools) ever expressed any concerns, just praised both his behavior and academic achievements.

The family 'diagnosis' is based on his food issues, which they say are part of his need to be controlling, and based on him being "different" - see my OP. Nothing else, as far as I know...

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Stubbed · 29/07/2015 11:36

Does he have other indicators? Problems with talking etc when young? Wants to walk on the lines only? Doesn't like certain noises or colours etc? I don't know much about autism but a friend's son has these and her son's teachers have mentioned potential autism

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MythicalKings · 29/07/2015 11:27

I'm from a family of teachers and I worked with DCs with SNs. I was pretty sure DN had autism from what I'd seen and from what her mum had said. I talked about it to other family members with some experience of SNs before mentioning it to DN's mum.

DN was already being assessed as she had not been reaching milestones but I was sure it was more than learning difficulties. I don't think we were "talking behind her back" in a nasty way. I didn't want to upset her without gathering other informed opinions.

Others thought the same so I did talk to her mum. Her GP and Paed said it wasn't so but the more I saw, the more I was sure. And so was her mum, after reading up on autism. This was the early 80s when autism was less known.

It was a battle but eventually DN did get the diagnosis and the help she needed. If we family members hadn't mentioned it, it could have taken even more years before diagnosis.

I think the mention of autism was well meant.

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