Autism; how do i know?

I get asked a lot as a parent of autistic and ADHD kids and as someone going through the diagnosis process myself, where did I start. This is my recommendation for trying to look for the traits within yourself and others.

As a parent of someone who maybe Autistc or someone trying to figure out if you are autistic, I have found the following really helpful in trying to determine which traits are relevant as the spectrum is sooooo wide; as it is a personality spectrum as much as anything else. 

This is the information I have gathered as a parent and as someone going through the process of diagnosis myself, what I have found to be personally true and what works for me and my family. I also use language I am happy to use about myself and my kids; I am not young and I know that there are lots of youngsters out there using language which is more and more considered not only appropriate but it is empowering! So seek them out! I apologise if my definitions do not fit yours; this is where I am on my journey now. I am sure it will change.

Do your own research on the general definitions of what autism looks like, but as a starter I would recommend this article from the National Autistic Society: Please stick clear of autism speaks; they are generally shunned by the autistic community as they are looking for answers to fix autism and advocate some very extreme methods of cure’s which are infact dangerous.

As a parent; do not look for ‘does my child present as someone who is autistic?’. Looking for things like particular habits, voice tones maybe obvious in some people, but in others, particularly female presenting autism (available to both males and females!) it may not be. Additionally, the nasally tone, sometimes referred to as an autistic accent, can be attributed to birth trauma, ie lack of oxygen at birth. So if your child did not have birth trauma like that, it won’t be relevant.

As an adult looking to diagnose self; think about when you were a child, Or ask. At some point you may have learned to mask and it is what you are like internally, or before you developed masking, which is key.

  1. Hyposensitivity v Hypersensivity. I always found the terms ‘sensory seeking’ (the theory that we seek outside stimulus in order to understand and experience the world as we can’t process unless it is an extreme feeling) and ‘sensory avoidance’ (the idea that we avoid sensory input as we find it overwhelming) very confusing, and there are many reasons, not just the obvious ones, where a child or we may adopt certain behaviours in response to outside stimuli or lack of that stimulus. An autistic person maybe hypersensitive and hyposensitive in response to different things, just depending on which coping mechanisms have worked well for them. Additionally just because a child maybe loud (ie have not learned to regulate the volume of their voice) does not mean they are not also sensitive to noise. We can also have a mix of being hypersensitive or hyposensitive in different areas of our life.
    1. Hyposensitive: Unaware of pain when hurt or even clothes are too small, unaware of mess on hands or face, unaware when they are full and need to stop eating, unaware when they are thirsty, unaware of others touch, unaware of personal space, unaware of emotional reaction of others, unaware of their own emotional reaction (no cognitive understanding of emotion even though displayed in their actions; more clear in adults), unaware of tone of voice in themselves or others unless very extreme (so may come across as being emotionless or rude and only responding to shouting or extreme joy for example), can zone out and be in their own world even in a busy environment, not be aware of smells either bad or good (easier to tell with bad); may seek out experiences which mean they can experience these things such as hurting themselves when upset with their own actions, uses mouth to explore the world, putting ear against speakers, rubbing or tapping things sometimes quite hard (although in my experience this latter option may be a hypersensitivity and when touched in the right way, or touch certain objects in the right way, it is to soothe rather than seek sensory input from external sources). Struggling with personal relationships due to lack of ability to empathise or be conscious of output. 
    2. Hypersensitive: so sensitive that in some cases the individual experiences pain, sensitive to touch (unless touched correctly by trusted people), sensitive to clothes fabrics, labels, seams, socks, textures etc, doesn’t like mess, sensitive to tastes and textures of foods, sensitive to noise, loud voices, shouting, certain places where sound reverberates weirdly, other people’s eating noises and small noises, sensitive to light, sunshine, bright colours, sensitive to emotions, their own as well as others (often reacting in a fight or flight response even when told everything is ‘ok’ as they know it isn’t), sensitive to outside stimulus from the world, street, busy road, classroom etc (this can result in either overwhelm fight or flight, distracted responses as well as disassociative own world responses; too much to visually process in one go), sensitive to smell. Generally these are classed as sensory avoiders (although I again don’t agree with these definitions) but may display as retreating from environments, hiding and not willing to participate, needing to wear maybe sunglasses or headphones or ear defenders, not wanting to be touched or hold hands, very particular eaters, only wearing certain clothes or only visiting certain places they know they can cope with, struggling with personal relationships due to emotional overwhelm. Remember in both cases masking in environments which aren’t ‘safe‘; read this definition as ‘I don’t know if I will be loved or liked if I show my true self’, and so the extreme behaviour is saved for people they know will love them no matter what. 
  2. Mental Health; there is much research to show that having autism can lead to mental and emotional health conditions as we
    1. respond to the world and maybe triggered into fight or flight, trauma like responses.
    2. try to process the world around us and struggle with social interactions and the pressure and expectations of certain types of behaviour, leading .
    3. develop unhealthy coping mechanisms (those of us that develop healthy coping mechanisms are often undiagnosed as a result)
    4. try to control the world around us so we feel safe, which can look like eccentric behaviour or result in anger when those controls are undermined.
    5. The key to your mental health is understanding your autism and developing healthy coping mechanisms in order to manage your life, so you live a fulfilled life. If your GP would rather look at simply your mental health, and not explore a potential diagnosis, then you should think about seeking a second opinion. You can do this with the help of others; I would recommend health professionals as well as support groups in person and online. Many health professionals are not autistic and so the standard help, isn’t always helpful (such as exposure therapy which can cause trauma unless led by and really wanted by the individual. For example, who needs to be exposed to loud noises? A life can be led where it is in calm quiet environments and the individual can flourish. The individual wants to regularly go to loud music venues as they gain from the social interaction or emotional connection to music? Then ways can be found around it. But it must be led by the individual and not forced on children). 
  3. Female Presenting Autism:  female and male presenting autism can appear in any gender; the names are very confusing! The same with ADHD. Female presenting autism may have some of the hypersensitive traits, especially towards emotion. This allows them to read other people better; allowing them to adjust their behaviour. This is a survival mechanism which ensures they fit in with their clan, tribe or herd, form strong emotional bonds and aren’t rejected. If you class yourself as highly empathic it may be that you are autistic. If you find social interactions or doing certain tasks tiring, so that you need a total break afterwards, maybe for hours or days, it maybe you are autistic. If you find yourself hiding behaviours or feelings, only to be overcome by them when you are alone, it maybe that you are autistic. If you find it easy to mimic the behaviour of others, to fit in or are a chameleon, if maybe that you are autistic. If you find that you purge your emotions, through periods of inaction, low energy, depression, fits of crying, you may be autistic. If you enjoy socialising but are exhausted after it, it maybe that you are autistic. No one else knows what goes on in someone else’s brain and so we make the assumption everyone must feel like this or behave like this. Have conversations with close trusted friends and if you find that you do not mirror them, you maybe autistic. 
    • ADHD; female presenting ADHD is very internal. It is not energetic, external or interactive. It maybe that you are easily distracted, very disorganised (read as a untidy organiser), and forgetful. It maybe that you struggle to relax and your brain is always on the go. You may have female presenting ADHD. More about ADHD below.
    • I would recommend the tests for ‘home testing’ here: Do your own research but I have found this doctors credentials to be good and it is the the RAADS-R test which is designed to bring out those that do not fit the typical masculine presentation of autism (which is what the NHS still basis ALL initial assessments on; not helpful if you are struggling with female presenting autism.
  4. Demand Avoidance: this is a trait which is strongly linked to autism. It can be seen as someone being difficult or lazy. PDA (Pathological Demand Avoidance) in my words is where the thought of doing something is so overwhelming that it triggers them to not do the task. It maybe something has been asked of someone which they weren’t expecting; a simple change in plans or as task, or a need to do something for example exercises or a glass of water, an errand. The task feels very big in their head. This is due to the fact the steps of getting to that goal, may genuinely be too much for them to process in one go. This maybe because they are overwhelmed and may need a break or a rest at that time, are generally are in a very triggered state and need a trauma informed healing process, are overwhelmed and so built the goal up to be more cumbersome that in is, it maybe they really don’t feel like doing it. This can result in the person being argumentative and difficult over what appear to be small things, appear lazy or go into total shut down; disassociation and non responsive. It may present in another way. We may find that we are triggered in this area by certain people or certain tasks; that person maybe a safe place or they may regularly make us do things we do not want to do and we may be defensive from the outset. The key is to recognise this trait in ourself, and try to understand the reason why, or help someone else understand why they have reacted this way. There are many great coping mechanisms for this trait. Here is a great article from the National Autistic Society which I recommend as a starter:
  5. ADHD: Again ADHD is linked to autism but not exclusive to it. It is a processing disorder and further to what I have said above can present in many different ways. In short the symptoms of ADHD can be divided into two groups: inattentive behaviours or hyperactive and/or impulsive behaviours. Inattentive symptoms can include being very distractible, having difficulty remembering, forgetfulness, difficulty listening to others and poor organisation. Hyperactive and impulsive symptoms can include impatience, excessive movement or some sort of fidgeting constant motion (even small), acts before thinking, talking and interrupting as well as difficulties turn taking. This resource centre from the ADHD foundation is great and there are lots of articles about female presenting ADHD as well as general information.
  6. Genetics: there is a link to genetics and autism. There is also a link to other disorders and illnesses; this article from the National Autistic Society is useful.
  7. Diagnosis: I genuinely believe that a correct diagnosis will support you personally two fold; safety in a correct diagnosis so you can learn to be confident in your own skin and also give you the outside support that you will need. I also believe that it will help others; the more who are diagnosed as having a non-neurotypical mind, the less it can be swept under the carpet; the less we can continue to live in a world where education and the work place is actively opposed to a growing part of the population. It is true in my opinion that where we make life easier for those of us with ADHD, Autism and other related conditions such as dyslexia, it genuinely works easily for the whole population. But this is for your own consideration. The next course of action would be to book an appointment with your GP (in the UK) to discuss it further. I would recommend:
    1. ask for a GP which specialises in this area; many have very little idea.
    2. make a list of why you think you may have autism or ADHD (or both!)
    3. make a list of how it is making your life more difficult.

I would love to hear your experiences and thoughts.

Love as always

Rachael x

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