New diagnosis for son

Hi all I was wondering if anyone can help us. Our 6 year old son has been diagnosed with ASD, ADD, Dyspraxia and Hypermobility. He is a very loving positive and happy boy but can change very easy to frustrated, angry or even annoyed. We have admitted that we could possibly be more patient with him but we are both new to all of this and don't necessarily have the knowledge and understanding of all of his conditions. We have been told it's all kind of self service after diagnosis but we have no idea where to start. There are no support groups where we live just other mum's children gave a similar diagnosis. 

Basically does anyone have any tips or ideas to help us with any therapies he could try or even ways to help him understand how has different. He doesn't even know about his diagnosis.

Help. 

  • Hi there Slight smile

    It is a bit 'self-serve' as you put it, though there are a lot of things your son's school can do to support him now he has been diagnosed; try to arrange a meeting with the SENCO and see what strategies they usually use to support children like your son. If he responds particularly well to certain strategies you can also use them at home. 
    There is also the NAS parent to parent service https://www.autism.org.uk/services/helplines/parent-to-parent.aspx which may help you feel a bit less isolated.

    I'm no expert on ADD/Dyspraxia/Hypermobility, but as an autistic adult I do know a fair bit about ASD and am happy to share some insight/approaches and answer questions you might have.

    Apologies in advance for the wall of text but it is a complicated and often variable subject, so please bear with me. Slight smile

    So for starters, Autism is often erroneously thought of as just "social impairment", but actually tends to affect the way your child interacts with the world in a variety of areas (each autistic person is different and not all of these are present in every individual to the same degree or at all, but it is an overview);

    Communication:
    Autistic people may have body language that differs from the 'norm'. We may show little outward emotion or express ourselves in unusual ways (expressing excitement by arm flapping or jumping, for example).

    We often dislike eye contact and unsolicited touch (e.g. a handshake). This may be more the case with strangers than parents, for example, or there may be little difference.

    We often find it hard to extract important spoken information from background noise (filtering). 

    We may take longer to process communicative input, especially if under stress (e.g. from unpleasant sensory stimuli).

    We may communicate verbally in unusual ways or not at all; many children with aspergers (for example) speak in an unusually adult manner on topics of interest. Some autistic children are completely mute in certain situations or generally. Many express themselves in a variety of non-verbal sounds.
    We may struggle with sarcasm or figurative language, especially as children. We may be seen as gullible due to this.
    We often repeat words and phrases, it can be almost like we are speaking in quotes (this is called echolalia). For example, I once looked out the window of my house in October and promptly started reciting verbatim the Thomas the Tank Engine story "An autumn day"! My mum was baffled.
    I was also singing along to familiar songs with perfect verbal clarity before I would talk; I obviously had the ability, but not the inclination. I also went through a phrase of naming everything with the inventive use of "learn to read" flashcards (the soap 'Brookside' became 'Danger Cat', because I saw a scene in which a cat caught a rat in someone's kitchen).

    We may struggle to instinctively understand social or other rules, or work out that they apply to different situations than the original context we learned them, i.e. "It's inappropriate to interrupt mum speaking to a teacher at parents' evening, but today she has met them after school when it is not parents' evening so... *interrupts*"
    It may take a few goes to get a child to work out what is appropriate in certain situations, what is never appropriate and what is always OK.
    We may never grasp this entirely!

    We often find it hard to tell if someone is becoming bored with the topic we want to discuss, or if we have inadvertently upset someone, or if someone wants to leave a conversation for whatever reason.


    Emotion:

    Autistic people, especially children, often struggle with emotions.

    We often experience Alexithymia; an inability to identify and articulate emotion (our own and others').

    Another personal example; for me there isn't really much of a difference between bored, uncomfortable, homesick, anxious, tired, depressed, etc. It's just a big 'negative' mush and even as an adult it is hard to work out what the problem is and therefore how to solve it. It was worse as a child.
    As a 'bonus', I often exclaim, without really thinking, that I'm one of these things when I am really one of the others! This can cause social difficulties, e.g. blurting out that I am 'bored' at an extremely inappropriate time (e.g. a meeting at work), when actually I'm just feeling uncomfortable because the lights are too harsh. Oops.

    We also have difficulty with cognitive empathy; that is "working out what another person might be thinking or feeling". We do not, contrary to popular belief, lack emotional empathy because of our autism; the ability to feel what another person is feeling, feel distress at the plight of another person in trouble or the desire to make that person feel better. We may feel emotional empathy unusually powerfully.
    We may not know how to
    react to these feelings in the socially expected manner or what to do in order to make others feel better.

    I have learned to deal with others' upset by developing a "making tea" compulsion whenever I see someone in distress; even if that person leaves the vicinity everyone else is getting an unsolicited cuppa.
    Amusing? Probably. The optimal response; often probably not, though it is usually well-received so it's obviously good enough. Slight smile

    We may 'bottle up' negative feelings over the course of a long period of time due to this inability to process or express them until we are physically unable to do so any longer, resulting in an 'explosion' of distress and anger (often referred to as a meltdown). These resemble but are very different from (in terms of causes and effective strategies) a classic childhood tantrum.
    It is very hard to get through to someone in the middle of a meltdown, giving a child "their way" does nothing to calm it. You simply have to try to avoid it in the first place by reducing the child's emotional load (e.g. avoiding sensory triggers, providing a clear schedule, etc) and ride it out when it happens. Afterwards, the person is likely to be completely exhausted, possibly embarrassed and probably concerned about the possible consequences of what their brain has just done 'on a particularly destructive autopilot', as it were.

    Sensory:
    Most autistic people have some difference in sensory processing. We may be over or under sensitive to any sense; touch, taste, pain, hearing, etc. Light and sound are common things to be hypersensitive to. We may be made extremely uncomfortable by things, e.g. noises, that non-autistic people don't even notice; say, a TV on next door. 

    Autistic children are often incredibly fussy eaters, and the "eat what's available or you go hungry" approach that can work on some non-autistic children will usually result in self-starvation. It's not a choice, it's usually caused by hypersensitivity to taste or texture that makes some foods unbearably unpleasant. I had to have all "chunky" foods (curries, pasta sauces, etc.) blended until I was in my late teens.

    Autistic people often 'stim', that is "engage in some sort of sensory self-stimulation". This is usually a comforting action for the person.
    It may be arm flapping, rocking, listening to particular music or sounds, there was a parent on here a while ago whose son would fast-forward DVDs repeatedly and watch them this way.
    Stimming in public may get looks from strangers, but should not be discouraged as long as it is not actively harmful; it is fulfilling a need for the child and may be helping them cope with anxiety or discomfort (re. harmful stims, some children do do things like head-banging, which would warrant intervention to try and find an action that fulfils the same need but does not come with a risk of injury).

    We may struggle to filter relevant information from the bombardment of sensory input we receive on a day to day basis. E.g. being unable to follow a conversation in a noisy area.


    Scheduling and focus on activities:
    An autistic child is usually one who is perpetually anxious about "what might happen next". We do not like the unexpected, we do not cope well with change or spontaneity, as a rule. 

    Having a clear schedule that you stick to (e.g. a visual timetable on display in the home) for even mundane activities (dinner, bedtime, computer time) and especially when you do something unusual together (like going on holiday or a day trip) will make an autistic child feel so much more secure in their everyday life.

    Many autistic children will, in the absence of a schedule, create their own from what they expect to happen due to past experience. When an adult then inadvertently does something to alter this self-imposed schedule, the child reacts with considerable distress. By clearly communicating the schedule you intend to follow to the child, you nip this in the bud and save yourself a lot of grief!

    An autistic child carrying out an activity is often hyper-focused on it, and any interruption to said activity evokes a viscerally uncomfortable reaction. It feels a bit like being asked to stop a bodily function in the middle, if you get my meaning.
    The number of parents on this forum who ask for help because "my child has a meltdown whenever we ask them to come and eat dinner", for example, is very high because of this characteristic of autistic children.
    Along with scheduling, a good way to get a child to disengage with an activity painlessly is to prompt them at intervals to bring what they are doing to a close (it's important that the child knows they do not need to verbally respond to these cues, as forming that response can evoke the same discomfort).
    "I'm about to start making dinner, you will need to come to the table in an hour so get to a point where you can finish", "Dinner will be done in half an hour, wrap up what you are doing", "I'm dishing up now, you will need to be off the computer and at the table in ten minutes".
    My mum developed this strategy independently (not knowing I was autistic until later in my childhood) and describes it as "planting a seed", which I like as a metaphor.
    Another parent suggested the use of an hourglass along with this strategy, for children who have difficulty with time perception.





    Re. telling your child about his diagnosis, I think this is a good idea and am glad that you are already considering how best to do this. Slight smile

    I would suggest that you present it very clearly in terms of a 'difference' rather than a 'condition'. Try to focus at LEAST as much on the positive traits that often come with autism as the challenges your son might face that other children do not. 

    The intent I have in suggesting this approach is not to minimise the difficulties that can come with being on the spectrum, but to encourage your son to develop self-compassion and confidence in himself that will ultimately help him navigate the world effectively (and even come up with coping strategies of his own that work for him in the future), rather than getting the idea that he is in some way 'defective', forcing himself to 'act like a non-autistic person' at the cost of his own mental health or possibly even responding with learned helplessness. 

    So to end this wall of text on a happy note, some positive traits that may be attributable to autism (your child may or may not have any of the following);

    * Genuine passion for and thorough knowledge of a subject or subjects of interest.
    * The ability to remain true to oneself in the face of social pressure.
    * Resilience.
    * Honesty.
    * Loyalty in friendships.
    * Aptitude for problem-solving.
    * Curiosity, a pervasive desire to know how and why things do what they do.
    * A deeply compassionate nature.
    * The ability to "think outside the box" and approach a problem in a novel way.

    There are also now books and other media that specifically approach the topic of autism in ways that young children can understand. I've heard good things about the way sesame street, for example, has handled their new autistic character. Watch and do a bit of background research on anything you might want to use in this way, however, as incorrect (and sometimes quite demeaning) assumptions about and depictions of autism are still unfortunately common.
    Anything that has had actual autistic people heavily involved in its production (e.g. as authors) is usually pretty reliable!


    If you have any questions, feel free to ask. We on the forum are here to support you and your son.

    Emma x