The fear of the unknown

My son is 19months, shows all the signs and characteristics of autism, health professionals agree but cant give diagnosis until sees paediatrician. I already know he has it im just waiting for the diagnosis and my heart is broken. I cant help but blame myself and worry about his future! The not knowing what level or impact it will have on his future and my other child. Is this normal? I find myself crying so frequently right now, am I being silly/selfish? Its all very new to me and my husband, no one in either of our families are neurodivergent or autistic. Please be kind with your comments....

Parents
  • Speaking as an Autistic older adult, whose peer group includes some people with Autistic Grandchildren; I am always keen to know about (free to access) child-friendly resources designed to support subsequent generations of Autistic young people to thrive.

    The most important resources are those parents, guardians, relatives and other community role models and mentors we encounter (across our lives): who see us for who we are as a person, facilitate our path to thriving, support our interests and healthy regulation, celebrate our passion and joy, help us to understand and accommodate there are different ways and timelines to make progress in our lives, plus share with us their quiet grace and company at times of our growing to deal with some of the transitions / bumps in our journey through life.

    As I recall "toddler me", or any other age group "me"; the highlighted peers and older generations around me have been those who concentrate on, engage with and celebrate: my personality, outlook, interests, capabilities and my contribution to others.

    E.g. the best relatives are remembered for giving you a small gift they believe you will love (not because it is your Birthday, not fancily wrapped up, not because of a brand name or fashion - purely, because they thought about you and knew you would love the gift and conventional "age appropriateness" need not be applied!).

    Sometimes, the most unexpected and unobtrusive people can be the true beacons / landmarks in our Autistic lives. 

    The tactful elderly neighbour who keeps a kindly eye on your best interests and fair play as you learn to explore fun getting to know your peers in the neighbourhood. 

    The unsung heroes of "it takes a village to raise a child". 

    The mentor from a different department at work - who couldn't care less about the mythical "not the done thing" hangups - but is passionate about supporting your continuing professional development - your style.

    The dear soul; who takes the trouble to confidentially check / signpost with you; about an unwritten / less obvious convention about attending an upcoming community event - be it clothing "norms", the  actual assembly time, or some unmentioned thing which you are supposed to bring with you ...via "telepathy" knowledge?

    The medic / receptionist who enthusiastically sounds on the phone etc. with you; as though they have genuinely been looking forward to having the conversation with you about - whatever it may be - in support of your way.

    I was navigating a particularly tough day yesterday - when I happened across this image which helped smooth my furrowed brow as "Our Amazing Brain Garden" on the spectrum also spoke to my inner toddler in a positive way (I had been battling unreasonable "red tape" beaurocracy and was glad of the real World grounding of the affirmation):

    https://www.socialworkerstoolbox.com/our-amazing-brain-garden-understanding-the-autism-spectrum-posters-worksheet-for-children/

    I also liked this poster around understanding and advocating in support of our reasonable adjustments (although, personally, I would prefer the poster to say "I am Autistic" instead of "I have Autism") as with each decade I find it is worthwhile to review / revise supporting my own needs as an Autistic person (we are people with evolving life experience needs - not an inanimate object to be set in time at e.g. the event and age group of our diagnosis assessment day).

    www.socialworkerstoolbox.com/.../

    There are many Autistic role models to be noticed across all walks of life and among each generation.  Autistic profiles encompass a broad range of people across the globe.  There is no such thing as a "typical" Autistic person - although we may share overlapping commonality in some areas of our respective life experiences.

    As an Autistic community and as Autistic individuals; we should learn to pursue our passions, enjoy our worthwhile connections, share our strengths and take our place in the World. 

    Admittedly, we might be well advised to do so "our style" and on our own terms (as part of our personal energy and mind / body regulation success strategies).

    The art form, on a personal level; is to ensure the settings we experience are kept up to date with our current personal reasonable adjustments information as appropriate.

    The obligation falls equally upon both Autistic people and non-Autistic people, alike; to learn about and adapt to each others': strengths, contributions, challenges and worth.

    There are different varied strategies we may choose to deploy to achieve this in in different settings and at various stages of life (e.g. healthcare, education, workplace and community).

    Healthcare is a particular example of a setting where e.g. updating our:

    a) Summary Care Record

    digital.nhs.uk/.../summary-care-records-scr and

    b) Reasonable adjustment flags on the NHS "SPINE" digital patient records

    ...as per legislation, NICE guidance and our own feedback as the "Expert by Experience", which can assist communication across the clinician, health and social care teams and/or administrators - as  those professionals with NHS smartcard access will be able to see our documented reasonable adjustments, thereby reducing some of our self-advocacy load.

    There is no need for us, as Autistic patients / carers, to feel embarrassed about opening up a conversation about this subject with a GP etc., (nor for us to accept any implementation excuses), as NHS England makes it clear that: "This service is live. It has been live since 2019, and has seen wider adoption since its inclusion in the National Care Records Service in 2023"). 

    c) when healthcare professionals attended their mandatory Oliver McGowan training in support of Learning Disabilities and Autism - they will have been educated on the reasonable adjustments protocols and resources.

    https://www.hee.nhs.uk/our-work/learning-disability/current-projects/oliver-mcgowan-mandatory-training-learning-disability-autism

    Oliver McGowan code of practice

    Sets out standards for training on learning disability and autism for Care Quality Commission (CQC)-registered health and social care providers and their staff:

    .www.gov.uk/.../oliver-mcgowan-code-of-practice

    After all, the emphasis is not that we are trying to "fix" ourselves.  Rather, we are tailoring, to our needs, amendment to those aspects of a default environment specification (which had previously been defective in that; it had overlooked the requirements input of up to circa 20% of the population which it is intended to serve). 

    https://www.autism.org.uk/advice-and-guidance/employment/what-are-reasonable-adjustments-and-when-can-they

    I believe life is a navigation chart - complex to all people.  Autistic people may just find benefit from an augmented key / legend to that chart - as the "standard" one was only an 80% population fit ifor purpose n the first place! 

    It might feel daunting sometimes. 

    However, knowledge, trial & error, access to good people in your wider community and deploying advocacy are available in your own virtual toolbox. 

    In time, your Son can grow to select his own compass and key to his life's chart.  He does not need to travel solo - as he is not alone.

Reply
  • Speaking as an Autistic older adult, whose peer group includes some people with Autistic Grandchildren; I am always keen to know about (free to access) child-friendly resources designed to support subsequent generations of Autistic young people to thrive.

    The most important resources are those parents, guardians, relatives and other community role models and mentors we encounter (across our lives): who see us for who we are as a person, facilitate our path to thriving, support our interests and healthy regulation, celebrate our passion and joy, help us to understand and accommodate there are different ways and timelines to make progress in our lives, plus share with us their quiet grace and company at times of our growing to deal with some of the transitions / bumps in our journey through life.

    As I recall "toddler me", or any other age group "me"; the highlighted peers and older generations around me have been those who concentrate on, engage with and celebrate: my personality, outlook, interests, capabilities and my contribution to others.

    E.g. the best relatives are remembered for giving you a small gift they believe you will love (not because it is your Birthday, not fancily wrapped up, not because of a brand name or fashion - purely, because they thought about you and knew you would love the gift and conventional "age appropriateness" need not be applied!).

    Sometimes, the most unexpected and unobtrusive people can be the true beacons / landmarks in our Autistic lives. 

    The tactful elderly neighbour who keeps a kindly eye on your best interests and fair play as you learn to explore fun getting to know your peers in the neighbourhood. 

    The unsung heroes of "it takes a village to raise a child". 

    The mentor from a different department at work - who couldn't care less about the mythical "not the done thing" hangups - but is passionate about supporting your continuing professional development - your style.

    The dear soul; who takes the trouble to confidentially check / signpost with you; about an unwritten / less obvious convention about attending an upcoming community event - be it clothing "norms", the  actual assembly time, or some unmentioned thing which you are supposed to bring with you ...via "telepathy" knowledge?

    The medic / receptionist who enthusiastically sounds on the phone etc. with you; as though they have genuinely been looking forward to having the conversation with you about - whatever it may be - in support of your way.

    I was navigating a particularly tough day yesterday - when I happened across this image which helped smooth my furrowed brow as "Our Amazing Brain Garden" on the spectrum also spoke to my inner toddler in a positive way (I had been battling unreasonable "red tape" beaurocracy and was glad of the real World grounding of the affirmation):

    https://www.socialworkerstoolbox.com/our-amazing-brain-garden-understanding-the-autism-spectrum-posters-worksheet-for-children/

    I also liked this poster around understanding and advocating in support of our reasonable adjustments (although, personally, I would prefer the poster to say "I am Autistic" instead of "I have Autism") as with each decade I find it is worthwhile to review / revise supporting my own needs as an Autistic person (we are people with evolving life experience needs - not an inanimate object to be set in time at e.g. the event and age group of our diagnosis assessment day).

    www.socialworkerstoolbox.com/.../

    There are many Autistic role models to be noticed across all walks of life and among each generation.  Autistic profiles encompass a broad range of people across the globe.  There is no such thing as a "typical" Autistic person - although we may share overlapping commonality in some areas of our respective life experiences.

    As an Autistic community and as Autistic individuals; we should learn to pursue our passions, enjoy our worthwhile connections, share our strengths and take our place in the World. 

    Admittedly, we might be well advised to do so "our style" and on our own terms (as part of our personal energy and mind / body regulation success strategies).

    The art form, on a personal level; is to ensure the settings we experience are kept up to date with our current personal reasonable adjustments information as appropriate.

    The obligation falls equally upon both Autistic people and non-Autistic people, alike; to learn about and adapt to each others': strengths, contributions, challenges and worth.

    There are different varied strategies we may choose to deploy to achieve this in in different settings and at various stages of life (e.g. healthcare, education, workplace and community).

    Healthcare is a particular example of a setting where e.g. updating our:

    a) Summary Care Record

    digital.nhs.uk/.../summary-care-records-scr and

    b) Reasonable adjustment flags on the NHS "SPINE" digital patient records

    ...as per legislation, NICE guidance and our own feedback as the "Expert by Experience", which can assist communication across the clinician, health and social care teams and/or administrators - as  those professionals with NHS smartcard access will be able to see our documented reasonable adjustments, thereby reducing some of our self-advocacy load.

    There is no need for us, as Autistic patients / carers, to feel embarrassed about opening up a conversation about this subject with a GP etc., (nor for us to accept any implementation excuses), as NHS England makes it clear that: "This service is live. It has been live since 2019, and has seen wider adoption since its inclusion in the National Care Records Service in 2023"). 

    c) when healthcare professionals attended their mandatory Oliver McGowan training in support of Learning Disabilities and Autism - they will have been educated on the reasonable adjustments protocols and resources.

    https://www.hee.nhs.uk/our-work/learning-disability/current-projects/oliver-mcgowan-mandatory-training-learning-disability-autism

    Oliver McGowan code of practice

    Sets out standards for training on learning disability and autism for Care Quality Commission (CQC)-registered health and social care providers and their staff:

    .www.gov.uk/.../oliver-mcgowan-code-of-practice

    After all, the emphasis is not that we are trying to "fix" ourselves.  Rather, we are tailoring, to our needs, amendment to those aspects of a default environment specification (which had previously been defective in that; it had overlooked the requirements input of up to circa 20% of the population which it is intended to serve). 

    https://www.autism.org.uk/advice-and-guidance/employment/what-are-reasonable-adjustments-and-when-can-they

    I believe life is a navigation chart - complex to all people.  Autistic people may just find benefit from an augmented key / legend to that chart - as the "standard" one was only an 80% population fit ifor purpose n the first place! 

    It might feel daunting sometimes. 

    However, knowledge, trial & error, access to good people in your wider community and deploying advocacy are available in your own virtual toolbox. 

    In time, your Son can grow to select his own compass and key to his life's chart.  He does not need to travel solo - as he is not alone.

Children
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