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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:
sailorcherries · 12/10/2017 22:43

His sleep is awful. We have seen a sleep team who said it is anxiety ans behavioural.

He wakes 2-3 times a night, cannot fall asleep without two different night lights and a specific pillow set up, refuses to sleep without someone sitting at his door etc.
This has been an ongoing issue for his entire life. I made a thread about it as my first post here after being reduced to tears listening to him kick off for hours over bed time.
Now he doesn't kick off but we don't try to change anything or remove ourselves from our designated spot.

OP posts:
DancingLedge · 12/10/2017 22:43

Ime, some DC with high functioning ASD can suppress at school, and fit in, to an extent, in this structured environment. The suppression of their feelings then results in increased anxiety /anger behaviour at home, and sometimes aspects of OCD.
For both your sakes, explore what's going on for him. Speak to school, GP and ask for referrals.
You may need to be determined, persistent and patient.

You could also try to gain some understanding online. www.autism.org

CorbynsBumFlannel · 12/10/2017 22:44

I would be realistic in your expectations. You will be dealing with it on your own regardless. Or with whatever family/friend support you have. A diagnosis comes with literally no support. You will be discharged from your paediatrician with a diagnosis letter and that's it. You can apply to go on training courses but you won't learn anything you can't find on the NAS website.
I'd concentrate on the issues your son has - sensory, flexibility of thought, emotional regulation and social communication. There's tons of stuff online about how you can work with children with these difficulties that will help him regardless of diagnosis.
I get you wanting an answer. But that is literally all you will get with a diagnosis. Whether that is worth going through the whole process is your call.

CocoaIsGone · 12/10/2017 22:45

It depends where you are - CAHMS and ASD assessment are separate where we are.

CorbynsBumFlannel · 12/10/2017 22:49

Melatonin could be a possibility to help his sleep.
There will be social skills groups at most schools. But they are nothing like sufficient. The one at my sons school was half an hour weekly! There was also very little support for generalising learned skills outside of the group time.

imip · 12/10/2017 22:50

Please don't bother with going via school to get an assessment, go straight to the GP. Teachers are not skilled enough with non-stereotypical presentations of ASD to progress a referral.

An example of an issue you may face. Dd has age-appropriate expressive language, but severely delayed receptive language. This was only found out as part of an assessment for an EHCP, one that I spent nearly a year fighting for. Dd cannot understand instructions at school, but masks it be copying her friend's she sits next too. It's s common coping mechanism.

sailorcherries · 12/10/2017 22:51

Corbyns it seems like you've had a pretty rubbish experience and been tossed out to the cold, but if my son has issues that can affect his entire life I'd like to know.

OP posts:
imip · 12/10/2017 22:53

In our area a diagnosis comes with some support, especially parental coffee mornings etc.

With 2 dds diagnosed, the biggest comfort is knowing your approaching things correctly, e.g., 5yo dd has funny eating habits, she's very passive about them. If she was my first I'd be annoyed that she wasn't eating properly, I know just don't sweat the small stuff. I think a diagnosis is very important in helping your mind set.

notgivingin789 · 12/10/2017 22:53

Cobryn I agree, depending on the area... you get a diagnosis your sent on your way. But it does have its benefits.

Yes there is stuff online but then it's hard to know which sort of stuff will be useful without an assessment. I loved going to NAS courses ! The most valuable thing in going to courses is that you get to meet other parents who are going through the same pathway as your DS.

Theirs specific events/ groups for children with Autism.

If things change and OP wants to send her son to a specialist school, a diagnosis is very very important.

WhichNewWoof · 12/10/2017 22:55

My son is HFA. Shoes and clothes are a nightmare. He attends a private school and the battle to get him into winter uniform is epic. If we hadn't started when he was 3 we'd not have gotten there. I still at age 6
have to distract him with the TV and dress him then hand him something to eat as we walk out the door to further distract him or face full on meltdown. He was diagnosed last year by the child development centre but was privately diagnosed at 3. The early intervention he had was a HUGE help although we paid privately for it all. Sleep is still a nightmare and he sleeps with various lights on etc. There will be resources for you if you get a diagnosis. School is only one part of his life and HFA kids can mask very well in school.

hiyasminitsme · 12/10/2017 22:56

I'm a GP and I'd certainly refer him based on that story. A year or so later he might even get seen by CAMHS Angry

CorbynsBumFlannel · 12/10/2017 22:57

Seems like you've answered your own aibu then op!
I would like to think that my experience is uncommon but knowing a lot of other autism parents I know it isn't.

ICantFindAFreeNickName2 · 12/10/2017 22:57

He sounds very similar to my ds who was finally diagnosed when he was 13. He was never a problem in school, very academic & well behaved but struggled socially. In primary school he managed to hold it together in school but by the time he was in high school, he was starting to have melt downs in school as well. In my opinion some schools don't seem to pick up on special needs if a child is doing well academically. I think things get worse as the children get older, and realize that they are different from the other children.
I think you should see your doctor (without your son) and basically list all your concerns (or give him a copy of your opening post). Once your child has been diagnosed (or hopefully even before) the school can put things in place to help him. A diagnosis will also protect your child in future, especially if he does start to have meltdowns.
I know its very scary as a parent to be facing this, when my child was diagnosed, we were obviously upset (but also relieved) the wonderful doctor, told us we just had to get him through his school years and then life would improve for him. He was right, he is now at uni, with a great group of friends.

sailorcherries · 12/10/2017 23:00

Thank you hiya. I think having a paediatric health professional ask about his needs, while not being diagnosed, has made me realise there may be problems. Although it was a dentist she deals with children daily and will see such behaviours and needs more often than I will.

OP posts:
ICantFindAFreeNickName2 · 12/10/2017 23:02

I just remembered, that my ds slept a lot better with two quilts rather than one. You can actually get weighted bedding I believe as its quite a common problem, especially with lightweight duvets.

GrockleBocs · 12/10/2017 23:04

I agree with there being little intervention or funding for an academic child. Our school do make significant adjustments without an EHCP
There are adjustments and protection that come with diagnosis and we are going for an EHCP several years after diagnosis.

noblegiraffe · 12/10/2017 23:06

Would second the PP who said problems emerged at secondary school. That’s quite common as students with ASD sometimes struggle with the transition, or having lots of different teachers, or can’t cope when the hormones kick in.
Students with an ASD diagnosis at my school automatically get put in a social skills group and are on the radar for potential problems. As a teacher who sees over a hundred kids a week, that flag on the system can be very useful as we simply don’t know them as well as at primary.

GrockleBocs · 12/10/2017 23:11

noble that's exactly why we're going for the EHCP.

notapizzaeater · 12/10/2017 23:14

I went to my go with a list like you’ve wrote out without my son and asked to be refered,

My dis is hf asc and has lots of these quirks

sailorcherries · 12/10/2017 23:19

Thanks everyone. I'll phone the gp in the morning.

OP posts:
Brandnewstart · 12/10/2017 23:47

Good luck OP. I have melatonin for ds1 and it has helped a lot, although they can become resistant to it (I think his dose needs increasing now he is older).
I know it is dispiriting to hear a diagnosis doesn't always offer ongoing intervention BUT it has given me and ds1 better understanding of why he does things and how I can help him. It means you can apply for DLA for him and use it to pay for things he would enjoy. Ask CAB/ charity to help you fill it in though as they have experience of dealing with this.
He has had help from his primary and secondary schools - communication group (learning social skills), IEPs (learning plans). 1-2-1 for an hour a day and now at secondary school he can use the nurture room which means he doesn't have to be in the main playground. He also had a home to school diary which was very useful. The nurture room is full of kids like him, so he has made friends from different years too. I would look at charities in the area that you can access. I work for one and we don't need a diagnosis, although some do.
Magnesium and Epsom bath salts can help relax some kids. I use them.

Brandnewstart · 12/10/2017 23:48

I have had all this intervention without statementing x

Pixiedust1973 · 13/10/2017 00:00

In my experience it is vital that you get school on board. If you don't you could find them obstructive. I discovered that to my detriment, or rather my kids. I got them referred at 6 & 8. School took offence that I instigated the referral rather than wait for them & wilfully blocked my efforts. Long story short. I moved area after 6 years youngest dx at 12 after new school made the referral. Eldests school, (because she was able to behave & no trouble, wouldn't refer) she was refusing to be assessed at the time anyway due to their idiot dads brainwashing so I could do no more. Had to wait till she was melting down at college before getting back on the treadmill after a counsellor wrote to the GP suggesting a referral. She was dx a few weeks ago at 18 having been failed a long time despite my best efforts & is now on Sertraline for her anxiety. Thankfully it seems to be helping.

Moral of the story is, definitely go for the dx now, but don't go behind schools back. At least inform them first, or get their backing. Best case scenario is get them to make the referral for you. Unfortunately its a fact of life that professionals always listen more to other professionals than us parents. Good luck.

Brandnewstart · 13/10/2017 00:08

I was going to add the same. Get the school on board if you can.

CocoaIsGone · 13/10/2017 07:32

My DS copes at school with minimum intervention from them, and the school has seen me as neurotic, and over-anxious, I know this as I have seen meeting notes under Data Protection Act. Even though the initial set of concerns were raised by them. It makes for a difficult situation, because while they accept the concept of masking, they are unwilling to make adjustments as they don’t see the issues. Nonetheless, they have taken some of it on board. But it is a struggle, because academically he is bright and likes to follow rules and school is routine.

I am gearing up to grit my teeth and go back for another conversation. It doesn’t help that non-resident dad refuses to accept the issues and used school as evidence for their being none. So if you and your DS’ dad are singing from the same song sheet, it will help.

But what has also worked is organising home more like school, so plans are clear and visible, no sudden changes etc. which are not explained. And understanding his need for rest time and balancing that with his need for physical input. I think if you develop an autism awareness and start viewing things through that lens, it helps.