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Advice for parent with undiagnosed child.

NAS77148

I have tried so many things and was beginning to lose hope until i came across this forum. 

I have four children two who i believe have ASD but have not been diagnosed.  Firstly my 7 year old he has had what i like to call his quirks since he was young but the gist is that he finds it difficult to regulate his emotions, he doesn't really know how someone else is feeling unless it is blaitantly obvious, he can have a breakdown at any minute over the smallest of things, alot of children at school claim to be his friend but he says he only has a couple, he hates change i general and to his routine, if you do not prewarn him for example you are going somewhere and just go when you some back you get a million questions, does everythng in the same order, randomly doesn't like a food he has eaten since he was a child, doesnt like certain foods touching the list could go on.  When he was younger he would have huge meltdowns and tantrums since he has grown over years they are not quite so bad but I personally believe he is doing a lot of masking. However i try to talk through things with him and although it can be very challenging at times there are also times where i seem to get through to him and help him calm down but this tends to be because i have learnt his signs so try to stem it before it becomes anything. yet there is this complete other side he is so loving and kind, he randomly comes to give you a cuddle (on his terms) or just sits near you, he is great at sharing he's a complete dream.

My four year old however is a completely different story and i really need any help and advice that can be offered.  She also stuggles to regulate her emotions, doesn't understand how someone is feeling unless its obvious but often even when its her fault and you tell her often doesn't care until you mention some type of punishment then she may apologise (very unconvincingly), random breakdown, she shouts, screams, hits, kicks, pushes ect, hates changes in general, hates changes to her routine, doesn't really like to be spontaneous, has no sense of fear, seems to not really have a good level of comprehension - in the respect you can tell he something was wrong explain why and ask her if she understand she say yes then five minutes late is doing the exact same thing but doesn't get why you telling her off, she strugglings to sleep almost like she has insomnia, she can be rude but doesn't get why what she is rude like her brother, she can head but things, she can chew anything, she is obssessed with playing with her dolls (she calls babys) and treats them like real babies, again the list could go on.

yet like her brother there is a complete other side to her where she is sweet and loving and cuddly, she is really well behaved and you would never believe this other side exsist. she can be an absolute dream.

i contacted the gp who wrote a letter to her community peadiatrian  as he said he believe she has asd and adhd to which i explain i have been telling her peadiatricain for year something is there but he has done nothing. Well he proved me right he sent a letter back saying that i should self refer comfirming what i had already said about him.  I have spoken to the school senco who said she could refer to early help which i asked her to do, she said she would speak to her teacher and get back to me, this was around two months ago and i have heard nothing back, i have asked the school to ask her to call me plus i have emailled her and nothing. 

She is very good at masking even at her age and behaves at school all day so he teacher believes there is nothing wrong but its like a coke bottle that being shaken up all dy because as soon as she gets home 9 times out of ten she explodes and lashes at out at home including towards her siblings and can be physical with them. I want to help my baby girl but have no idea what to do i have used all the techniques i used with my son to no avail and can't get the help from local professionals i just dont know where to turn anymore and i am really struggling with what to do especially with the behaviour side of things.  

thank you fir taking the time to read this and thank you in advance for any help and advice you can give.

  • Hi, I don't have a lot of experience of looking after children, but I'll offer some general thoughts from my own experience, which I hope might be helpful.

    I don't understand other people's emotional states intuitively, but these things can be learnt intellectually. I used to write down 'rules' for what emotions or reactions were suitable for given situations. Given the age of your youngest child, they may have nothing to fall back on at the moment if they don't have an intuitive understanding of how others may react to a particular behaviour. Perhaps it might be too much to try to teach a child at that age about abstractions such as empathy, etc; could it be broken down into a series of rules until they are able to find to navigate such situations themselves? I.e. if someone does this, then do this. That might be more understandable.

    Regards the insomnia, I also have this, in part, because I never stop thinking except in rare circumstances where I'm 'satiated' sensorily, such as by bright lights. Obviously, you're best positioned to know whether that would be suitable for your child.

    Overall, I would imagine that many of these problems would improve with age, which may not help now, but it sounds like you're doing your best to provide a good environment, so try not to worry too much. Good luck with it.

  • I am new to the community (just joined today) and came across your post as I too have a child (6 year old girl) who is yet to be diagnosed but is awaiting an assessment. I have had concerns about my daughter's behaviours since the age of 18 months and it has taken best part of 3 years to get to the point of being referred. From my understanding girls are alot harder to diagnose as they do tend to mask behaviours/difficulties better than boys. 

    I'm not sure what area you live in but in my area there's a childrens / family intervention service (First Steps) that takes self referral for children and young people experiencing many common problems with emotional wellbeing, relationships and behaviour. Something like this may be helpful to give things a push with paediatrician/health professionals for an assessment as well as give you some strategies to help with some of the challenging behaviours. 

    We have been waiting 10 months since being referred so still no diagnosis but I am without a doubt my little one is on the spectrum and that has also been down to starting a course on understanding autism, it has giving me so much more clarity and has helped massively to understand what triggers to some of her behaviours are. So I would say try as much as possible to access information through sites like this to help better support your children. 

    Wishing you all the best.

  • Hi There, sorry to hear you are having a hard time lately with this - I hope these links can be helpful for you and your family:

    The following page contains a lot of helpful information about education for a child with an autism: https://www.autism.org.uk/advice-and-guidance/topics/education This includes information regarding getting extra support for your child in their education setting. 

    You can search for schools that cater for children with an autism spectrum disorder on our Autism Services Directory: https://www.autism.org.uk/directory 

     You may want to contact our Education Rights Service who provides information, support and advice on educational provision and entitlements. Please see the following link for further information: https://www.autism.org.uk/what-we-do/help-and-support/education-advice-line 

     If you need support with an appeal against a decision about a child or young person’s educational needs, you might want to contact our Educational Tribunal Support Helpline: https://www.autism.org.uk/what-we-do/help-and-support/tribunal-support-line 

    Additionally: 

    Individuals on the spectrum can often display behaviour that may be challenging. There will generally be a reason for this and it is important to try and understand the trigger for the behaviour when developing strategies. You may like to have a look at the following link for more information on behaviour and strategies: https://www.autism.org.uk/advice-and-guidance/topics/behaviour 

     You may be interested in seeking some professional support regarding the behaviour. You can search for professionals in your area we are aware of on the Autism Services Directory: https://www.autism.org.uk/directory 

     You might also like to take a look at The Challenging Behaviour Foundation website for further information and advice: https://www.challengingbehaviour.org.uk.  They also have an information and support service which you can contact by phone or email – details can be found here: https://www.challengingbehaviour.org.uk/for-family-carers/family-support-service/ 

    Hope there is something in these that you find helpful!

    Best wishes,

    SarahMod

  • Thanks for reaching out NAS77148.

    I'm entirely new to the site and currently undergoing assessment post 1st episode psychosis for our DD.

    I have no magic answers but are exploring things as we go day by day, hour by hour. One piece of advice given by the clinical psych was to remember to be parents. Boundaries are still required and that is proving a knife edge to walk and the patience of a Saint! That is hard... Very hard! 

    If I do come across anything I will certainly share.... 

    Sorry I can't be more useful at this stage