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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Aibu to speak to gp about DS and ASD?

71 replies

sailorcherries · 12/10/2017 21:57

For a while now I've wondered and worried about DS's behaviour and attitude towards things.
For reference, DS is 7 but is 140cm or there abouts, roughly 4ft 6/7 but weighs 7 stone despite us completely limiting his junk food, having healthy balanced diets and encouraging exercise. He has always been on the 99.99th centile for height and weight, never fallen.

Ever since I can remember he has been above average intellectually (this is important I promise). He walked and talked early, is ahead in school, enjoys reading and maths, is very analytical and has rarely put up with "baby nonsense"/role play (his words, for example in nursery he refused to participate in a game where a child wantes him to pretend to be a fire engine because he wasn't and couldn't understand why you would pretend to be one).

However, the flip side of that is slight quirks of his. He has fixated on hair and shoes for a long time. He will wear one pair of shoes until they die a death and then he will have a tantrum that has no end until we find another suitable pair. All shoes must be velcro, no laces allowed and if you try to make him wear lace shoes god help you. His hair can never be touched, never have any product in it and if a barber does put product in it he kicks off big time. If his hair sticks up he throws a major tantrum, think world ending, and he will not leave the house.
Both the shoes and hair issues have causes enormous problems with getting ready.

More recently, the past 3-4 years, he has stopped wearing any trousers that are not jogging bottoms. We even had to source jogging bottoms that looked like jeans for a more formal setting. He point blank refuses to get dressed otherwise.

He has had an obsession with hair and gymnastics for as long as I can remember. He will try to do your hair constantly and doesn't seem to understand when someone has had enough. He fixated on gymnastics and certain gymnasts for a year before we entertained lessons. He now does it religiously around the house.

As a child he found it difficult to understans social cues and norms. He once told a girl at nursery her dog wouls die soon as it was old, after she told him it was 7. He didn't understand why he was in trouble because what he said was factually correct. This type of lack of social awareness has grown and manifested itself in to him being quite critical/open avout appearances of others, his feelings towards others and so on. He cannot seem to see that this is hurtful, and he doesn't do it intentionally.

Progressivly his behaviour has been worsening, with more outbursts. He lies about silly things or things you have seen him do, he picks at the skin around his fingwrs subconsciously, throws temper tantrums, screams and shouts, lies on floors and refuses to get up, covers his ears to block out sound and can become quote aggressive. This has become more frequent and small things will set him off - getting ready in the wrong order; being told to wear a jacket when it is sunny because he cannot understand it might not be warm etc. He also has a habit of forcing himselg to be sick when crying to make matters worse and/or get his point across.

His interactions with other people can also be strained and, at times, different. He has a small handful of close friends, but finds it hard to interact and play with other children. He finds it hard to integrate himself with others and will remain alone until someone speaks to him and so on.

I've also posted before about his issues sleeping and a few posters mentioned their asd children having similar issues. I won't go in to too much depth but the thread should be in my posting history.

In the past a few people have indicated high functioning autism or aspergers syndrome but I've brushed it off. However today we attended a dental appointment whereby he received bad news and he went in to complete overdrive. He refused to listen, became hysterical, threw a hanky at the dentist, covered his ears and tried to run away. Eventaully she suggested we have a pre-visit to the hospital and wanted to arrange play therapy beforehand to make things easier for him to understand due to his needs. When I questioned her she assumed the same as others.

I'm now starting to wonder whether people may be on to something. I'm not excusing his bad behaviour, but the more I read on the subject the more he seems to fit some of the boxes. My only issue is that he doesn't act this way in school, aside from the shoes/clothing/friends and socialising. There are no outbursts.
Wibu to speak to a gp about this and take matters further? Am I barking up the wrong tree completely? Does he sound similar to anyone else's dc with a similar condition?

OP posts:
strawberryblondebint · 13/10/2017 07:42

Raise your concerns with school who can refer to ed psych to get the ball rolling. It wasn’t a long process for us (also in Scotland) and my daughter masks at school. For me the diagnosis really helped me to understand where she was coming from. Plus we joined a few groups which is wonderful for support for all of us. Good luck.

stitchglitched · 13/10/2017 07:49

Some of your son's behaviour sounds similar to my son who has a diagnosis of ASD. The food stuff in particular, my son is also very high percentile for both height and weight, and is utterly obsessed with food. His consultant recently referred him to a dietician and also prescribed melotonin for his similar sleep issues. Good luck with the GP.

Pixiedust1973 · 13/10/2017 07:58

I had exactly the same issue with my ex Cocoa. CAMHS went from verbally diagnosing my youngest with severe ADHD & Aspergers on the first appointment, (which he was fully on board with at the time, to (after deciding he'd had enough of being a husband & father,) discrediting me & saying I was trying to get the dx to get benefits to school, CAMHS & anyone who'd listen.

CAMHS listened to school, (who had an axe to grind because in their minds I'd undermined them by going behind their backs) did a complete U turn & put everything down to the marriage break up. It was ridiculous, they blamed everything rather than looking for the actual issue. The child sensed "trauma in the womb" I was unable to know how to be a parent because of my own traumatic childhood. They got quite offensive, but i refused to back down. Over 5 years I fought with school & CAMHS before finally cutting my losses & starting again.

New school, new county mid year 6. Was like coming out of the darkness into the light when I moved. I don't think I'd of got anywhere if I hadn't moved. That school did more for her in 3 months than the other one had in 6 years. If I could do things differently I'd of changed their schools much earlier & got the girls in somewhere willing to work with me rather than against me!

smartiecake · 13/10/2017 08:11

My son has a diagnosis of HFA ASD. Your son sounds like he would meet a lot of the criteria for a diagnosis. Do go to your GP. I went armed with a typed list of our concerns and that was sent off with his referral.
And do arrange a meeting with the school SENCO and tell them your concerns and you are going to the GP. ASD doesn't necessarily mean bad behaviour at school, my son has never been badly behaved at school and he is now in Yr6 with an EHCP. However other problems may arise with schooling as your son gets older so it's definitely worth getting help and asking for an assessment. Your son may need help at school in the future

sailorcherries · 13/10/2017 08:39

Thanks everyone. I'm going to phone the gp today and then type up a list of everything mentioned here and more.

OP posts:
CocoaIsGone · 13/10/2017 09:04

Oh pixiedust thank you for sharing, although I am so sorry you have been through this too. Yes, it is being blamed on me, he has even got these issues into the assessment report. Good to know about moving, I think this is where I am getting in my head, although it will be a 2-3 year plan. It is not feasible earlier due to massive legal fees. It needs a clean slate, and it is good to know that worked for you, thank you. I can imagine how hard it has been to get to that point, though.

sailorcherries best of luck Flowers

sailorcherries · 14/10/2017 21:30

I have an appointment for DS in just under two weeks so I'm going to stsrt typing up my notes.

OH and I then looked online and found the AQ test. Upon completing the child one DS had a score of 90 odd out of 150, indicating strong traits.

OH and I then took the adult test and he got 4 whereas I got 31 out of 50. OH said he thinks I display similar traits to DS and some slightly different ones.
Is it worthwhile pursuing something about myself? Did I pass this on to DS1? Will I have passed it on to DS2? I feel quite upset just now.

OP posts:
CocoaIsGone · 14/10/2017 21:40

All people on the autistic spectrum have a different configuration of issues, to greater or lesser impairment. It can be genetic, yes, but it is not within your control what you ‘give’. You are noticing the challenges at the moment as you have not started working with supportive strategies. Your child will have strengths and he has potential, just like other children.

I like this list for an alternative way of looking at DS’ traits:

www.aane.org/asperger-profile-strengths/

sailorcherries · 14/10/2017 21:49

OH wants me to speak to the gp about me, to see if there is any help/support for me dealing with things.

I have done well in life without any diagnosis or support but have had quite a few issues and so on.

I have read that ASD can be genetic and would feel awful if we were both diagnosed, thinking that it was my fault.

OP posts:
CocoaIsGone · 14/10/2017 21:58

But it would not be your fault, if you and DS were diagnosed, any more than it would be your parent/grandparent fault.

What it would mean is that you would have additional insights into challenges your DS might face and how to support him.

Plus people on the spectrum have personalities too, they are not just a set of traits. DS is very funny, cuddly and really on the ball. Once I stopped expecting him to behave in a neurotypical manner and looked at things with autism awareness, it made more sense.

If I were on the spectrum (and I don’t think I am), it would make more sense to me as I am socially awkward and shy (more so than DS). Maybe I need to do the test too!

EatTheChocolateTeapot · 14/10/2017 22:11

It is not a condition or a disease, it is part of who you are and who he is. Even though there are drawbacks to being on the spectrum, it cannot be dissociated from the person's personality.

sailorcherries · 14/10/2017 22:11

I know, just feeling quite overwhelmed just now with all the possibilities.

DS is a brilliant soul, with an amazing personality.

OP posts:
rupert23 · 14/10/2017 22:12

you can go to the gp alone to start with which is what i did. my son is 10 has ASD but years ago would have been diagnosed with aspergers. My son only wears Gap tracksuit bottoms/shorts etc as they are soft and he has sensory issues.He says everything itches or feels stiff. school trousers/shirts have to be washed many times before he can wear them. We have to buy the same clarks shoes for school as he says they are comfy. It took me two years to get a diagnosis and i think i only got that because my son was not eating and had pretty much given up on most of the foods he had eaten previously. He is eating better now and we cope better as a family now he has a diagnosis. i think i am more patient and we try to avoid meltdowns. i hope that you get a referral through your gp.

GrockleBocs · 14/10/2017 22:34

If it helps, I went into a complete spin when someone independent noticed my dc was displaying autistic behaviour. A total flap. Even through I had been saying the same thing to family for 18 months Confused
And like you I realised I was too and felt guilty. It's pointless though. All you can do is accept that you have insight into what is possible for an autistic adult and are best placed to understand him.

sailorcherries · 14/10/2017 23:00

Thank you everyone.

I have thought it on and off, commented to OH before and others have mentioned things. However it was the paediatric dentist assuming he was diagnoses as ASD, her shock at my reply and the insistance that ASD strategies wouls help that has tipped me over I think.

OP posts:
Corcory · 15/10/2017 00:15

Whilst awaiting an appointment and then a referral etc. which can take some time. It might be worth looking at sensory processing disorder which is often concurrent with ASD. Some of the things you have mentioned may well be helped by a sensory diet. Worth looking up. You may get some ideas to make life easier. The weighted blanket has been a boon in our household as well as fidget toys and things/situations to avoid to reduce the likelihood of a meltdown.

Titsywoo · 15/10/2017 00:22

Wow I was so weirded out by your OP. I thought for a minute it was something I had written a few years ago and forgotten about! My ds is exactly the same. Jogging bottoms and everything. He is autistic. We didn't find out for certain until he was 8 as no-one could really figure him out! We went private to get a diagnosis as cahms in our area is a w year waiting list. From what you are saying I would get him assessed. I'll be honest we don't get any help or anything but it helps us understand him better!

LonnyVonnyWilsonFrickett · 15/10/2017 00:25

I'm tired and a bit pissed, but absolutely your instincts are right. And while I wouldn't say we've been overwhelmed with support, the difference between having a diagnosis and not, has been night and day. Ds has just started S1 and already we are talking about potentially dropping a subject, gathering evidence so he has a scribe for exams, he is in a social group at lunchtime rather than being in the playground on his own, etc etc. It hasn't been easy and support is patchy, but the right diagnosis in the right school can be transformative.

MrKaplan · 15/10/2017 00:34

You don't need to have a diagnosis to start learning more about how he works. You can do some research yourself, start with Tony Atwoods complete guide to Aspergers.

The current medical terminology is that it's all autism but the Aspergers label is still useful in practice.

You can start using some of the techniques without a diagnosis, many of them are helpful for many kids. Just reading it will help you have more insight and perhaps recognise triggers and teach him to recognise his own triggers.

Dd is now able to tell me when something becomes overwhelming which helps us remove from the situation before it gets too much.

Additionally knowing the terminology will help you to put together your case for diagnosis. For example know what counts towards the triad of impairments, or whatever the criteria is this season.

Titsywoo · 15/10/2017 00:38

Oh and we have problems with the weight stuff here too. I find it really hard to deal with. He is nearly 11 and is 9 and a half stone at 5ft tall :( I try really hard to feed him sensible portions and healthy foods. He just so obsessed with eating and his motor control is awful so he hates exercise. It's very very hard.

sailorcherries · 15/10/2017 09:55

Thank you everyone, I'll definitely look at those things mentioned.

The weight is such a big issue. He just seems so huge, despite having a good diet and exercising. We've even cut out more things and it's not helped. I'm hoping another stretch will lean him out as he has started to say things like "I'm fat/chubby" etc and it breaks my heart.

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