Coping with recently diagnosed ASD 5 year old

Hi there our son of 5 was recently diagnosed ASD. He is high functioning. We always knew something wasn’t quite right so this has confirmed our suspicions however knowing he has this condition and will need our support throughout is the hard bit to digest. 

We have a 2 year old and 7 year old and it’s very stressful for all of us as we find our son upsets the dynamics of the family constantly. 

I feel under constant stress having to manage his sensitivity over various things, the screaming and whining that he does when something doesn’t go the way he desired.

It’s just all extremely overwhelming. I’d really like to know how we deal with these outbursts. They are happening daily they are intense when they do happen and we don’t know how to respond. We try to appease him we know he’s very sensitive but it’s hard work and can be really frustrating for all of us.

would appreciate any recommendations for support for us as parents please. 

Many thanks x

  • So, firstly things I hope might comfort you as a parent:

    A. Nothing you have described is your or his fault. The behaviour you describe is completely normal for an autistic child. It’s not easy to deal with, but seeking help here is great and demonstrates that you are doing your best!

    B. Find some other people with experience with autism to talk to. This forum is a great start! It can be very reassuring to know you aren’t alone.

    C. Try to take time for yourself (easy to say, I know) even if it means taking turns looking after the kids while the other parent de-stresses. If you are burned out you can’t help your children effectively and that helps no-one.

    So, dealing with the outbursts, which seem to be your main area of concern. Good news and bad news:

    Bad first- once he’s in one of these states, it is not really possible to get through to him and stop it. Even giving him his way on the issue that was the final straw won’t help, because it’s not a tantrum, but a release of an unbearable amount of tension and emotion that he cannot process as most people would. It needs to run its course.

    Now the good news is, with practice and a bit of autism knowledge, you CAN often predict it, and if you help him calm down before the metaphorical volcano goes off you can drastically reduce the number of outbursts he has.

    So I’m hoping as an autistic adult (now that I am capable of identifying and articulating my experiences which your son won’t be at his age) I can provide a bit of insight to help you with this. Here are some of the ways your son might be perceiving the world differently to you (people say AS is a disorder of communication but it is also very much one of perception) and adding to the problems that manifest as these ‘outbursts’.

    1.   Sensitivity to the environment: many autistic people are hypersensitive to sensory input. This can be light, sounds, textures, smells. Anything you can sense. You know how you can be really grouchy and find it hard to concentrate on other things when you’re physically uncomfortable? Well due to this hypersensitivity, that can be happening to autistic people due to things non-autistic (or neurotypical) people might not even notice! Perhaps there is a radio on in the house next door, or bright fluorescent lighting in the supermarket. Your son might be refusing to do something because something about it or the environment around it is hurting him, and he might not be able to articulate why.

    2. Filtering: very much related to the above, some of us find it nigh-impossible to filter out relevant input from the maelstrom of sights and sounds around us, especially in a busy environment. This can make it very difficult to process and follow instructions if something else is happening at the same time- and thanks to autistic hypersensitivity you might not even notice the distracting extra stimulus, so that might make us seem very rude or ignorant and lead to...

    3. Confrontation: lots of autistic people, especially children, do not cope well with confrontation. We can panic even if someone is cross with the person next to us! Now I obviously have no idea how you are parenting with regard to behaviour but I would say a reward system is generally far more effective for an autistic child than a telling off, which could contribute to an emotional explosion.

    4. Routines: this is the Big One. An autistic child is generally one who feels very anxious and insecure without a plan for what happens next. The easy bit is implementing one for things we can control like “this is when in the day we will eat, watch television or have a bath” or “things we will do at school today”.  

    The difficult bit is when a routine (explicit or not) unexpectedly changes. This can throw an autistic person completely off-kilter and make them feel deeply uneasy, even panicky, about not knowing what will happen next. Children will not have learned how to cope with those feelings yet, adults like myself can often hold it together, but feel the same deep discomfort and maybe break down when we are home and feel safe.

    The really difficult bit is when we implement our own in our head and then somebody tries to change it. In some (not all, they’re children too and will have their moments of genuine “throwing a wobbly over something inconsequential”) situations that is actually what is happening when autistic children are upset that they are “not getting their own way”. That child has written up a nice script of how this scenario is going to play out in their head, and that script is making them feel safe and secure. Suddenly someone else runs in with a different idea and chaos and terror ensues! 

    If the upset at not getting his way is about “what we are going to do next”, it might just be worth giving into that one. You can also forestall this by giving him a routine of your own devising well before an activity takes place.

    5. Emotional regulation: This is something autistic people can really struggle with. We can be incredibly mercurial and dramatic over things you don’t think are important, or react to things you would expect to cause deep distress with little disturbance on the surface. This is a result of the way the autistic brain is wired. 

    We are often incapable of offloading or processing emotions that cause us distress, so have a tendency to bottle up all the frustrations and setbacks of the day (and that can be a lot of things if you think back to the previous 4 points) until we physically cannot take any more and explode in tears, screaming and even (especially in children who have not taught themselves coping strategies) harm to the self or others.

    This is the meltdown and this is the point at which interfering rarely does any good. All you can really do is keep him safe, try to cover hard surfaces he might kick, etc. with soft things and perhaps let him wrap himself in a blanket- many of us find deep pressure very soothing. He can also do the blanket thing as he is starting to show signs of being stressed to hopefully forestall the outburst if he finds it helps.

    Afterwards, the person will be emotionally drained, exhausted, possibly very embarrassed and worried about the consequences of the outburst. 

    So, with that information in mind you can hopefully start to identify and avoid as many triggers as possible and by doing so greatly reduce the upset and disruption in your and your children’s lives. 

    Good luck!

  • Hello, There is a Facebook group - Autism Moms Support Group - which may be useful. It’s based in the USA but i think it has international reach. I steer clear of Facebook etc, so I don’t really know how it works. If you do find it useful, it would be good to know. One of my nieces told me about it. You can find it here.

  • Hi NAS38080,

    In addition to the advice from community members, you may like to contact our Parent to Parent Service who offer emotional support to parents and carers of children or adults with autism. This service is confidential and run by trained parent volunteers who are all parents themselves of a child or adult with autism .

    You contact the team on 0808 800 4106. Please leave a message and the team will call you back as soon as possible at a time that suits you, including evenings and weekends. Alternatively you can use contact the team via web form - http://www.autism.org.uk/services/community/family-support/parent-to-parent/enquiry.aspx

    Hope this helps,

    Nicky-Mod