Âûtism awareness, acceptance Month is upon us again. Every April we see posts, blogs etc raising awareness, acceptance. Yet still many need understanding.
My approach this year is meant to be satirical, aimed at highlighting just how many autistics and their families are repeatedly let down. It’s easy to jest but in reality. Why are so many let down? Why are so many not heard, not listened to? Not believed!!
Nothing contained within this is to be copied in any part, large or small without the express written consent of the author. All scenarios mentioned did happen/ are happening within my local area and nationally. They are not about one family or story but are all actual real-life experiences.
All identities have been changed (except my own), any reference that appears to correlate to any one person or event is not intended as such and no naming or shaming will be done. This is intended to support and encourage Professionals to see the bigger picture, to understand what autism may look like. It is not aimed are disrespecting anyone’s knowledge, experience or identity. All quotes in italics are by Actual Autistics, and/or parents of autistic children.
What’s Going Well (What were told)
- Increase in the number of staff and autism trained professionals.
- Increase of autism based resources.
- More Autistic voices are being involved (albeit for the adult pathway)
- Children, including girls being identified sooner.
- An increase in support pre-assessment, such as virtual cygnet. (still needs work, and based on nothing being available before)
- Senior Commissioners wanting to listen.
- More parent carer involvement.
- More co-production between departments & services.
- Some fantastic professionals do:
- Put the child first.
- Listen to families.
- Don’t make assumptions.
- Involve the correct services/professionals.
- They see the whole picture, not swayed by other professionals (who may not have been involved very long, or by their admission have no experience of the concerns raised)
- Consider that parents might have their own undiagnosed needs.
- The autism team (when reached)
What’s not Going Well (What we {parents, professionals & families} see and experience)
- No understanding of autistic masking (Flight, Fight, Freeze, Fawn)
- Not involving autistics in the development of policies etc
- Few understanding PDA- pathological demand avoidance-, and that it needs different approaches than typical autism strategies.
- Schools punishing autistic needs, professionals (across, education, social care and health) insisting autistics in a meltdown can make coherent choices. Including exclusions, hugely due to lack of understanding masking.
- Long waiting lists with no communication unless parents/families keep chasing.
- Request for an autism team member to join TAF/CiN etc, ignored. When chased the autism team have never been asked to be involved.
- Parents removing children from school because School are failing the child, yet parents are blamed.
- Families facing accusations, often because they don’t feel they’re being listened to (even if they are professionals themselves)
- Families being told repeatedly to attend courses, often based on neurotypical parenting strategies- these do not take into consideration autistic parents who may struggle themselves to understand the approaches)
- Offers by local autistic groups/professionals and parents (some free) training, yet refused/ignored for textbook training. Books are good, lived experience will always be more valid.
- Professionals being unable to put their hands up and admit they get it wrong sometimes too. Rather than admitting bland is directed somewhere else.
- Professionals with their own needs or personal experience of autism or additional needs are often more sensitive, more approachable and more understanding. This doesn’t mean they can’t do their job, it often enhances it.
- Statistically, if one family member is autistic there’s an 18% chance of another family member being autistic. This doesn’t take into account the hundreds of undiagnosed autistics.
- Not using identity-first language
- Recommendations such as Autism speaks (a US-based company that researches Autism cures) it other neurotypical strategies.
- Use of jigsaw pieces/logos- most of the autistic community do not like puzzle pieces “we’re not missing anything”- “we don’t need solving/fixing” (This is not to take away from any autistics who do like them, stated most).
What would “best practice” look like to families, and actual autisitics.
- “Person-centred approaches.” (most areas promote this but most don’t seem to put it into practice).
- “Understanding masking.”
- “Understanding PDA”
- “Involving autistic adults, parent carers in designing services.”
- “Listening to families, especially when they have experienced”
- Using autism strategies.
- Early Identification as suggested within the Council for Disabled Children framework.
- “Treating all how you’d like to be treated (with dignity and respect).”
- “Respecting families preferred language.”
- “Prioritising consistency.”
- “Clear and accurate communication inc. being careful not to over-promise anything”.
- “Rejecting the idea of ‘high-/low- functioning’ autism and understanding all autistic people can require support, which may vary day today.”
- “Understanding sensory needs and other comorbidities.”
- “Good listening skills and adaptability as learning from books, lectures and courses needs to be applied to the individual and their family just as everyone is different; every one with autism is different they may be similar to others but you need to think out of the box for the individual best duty of care.”
- “Prioritising consistency.”
- “Clear and accurate communication inc. being careful not to over-promise anything.”
- “Rejecting the idea of ‘high-/low- functioning’ autism and understanding all autistic people can require support.”
- “Understanding ‘Anxiety’ as this is a root cause of many issues faced by those on the spectrum. How this impacts their biology and therefore their behaviour. How this can be helped.”
- “More understanding and training for professionals working with children and all of the above.”
Everything above is happening now!
Families repeatedly let down, incomplete assessments done. Professionals (even autistic ones vary in their understanding of autism and masking.
What is Masking? Why is it so misunderstood!
My autistic daughter (14) describes it as being in the back seat, seeing what’s going on but not being able to do it. It’s a coping mechanism.
She amazes me with her intuition.
In response to being asked,
“Can autistics make conscious decisions when in meltdown?”Her response:
When asked about being made to look up, or “look at me”- at the time she said this, she was 9, pre-diagnosis.
“Look, that’s lovely but you need to understand that when
someone -child or adult- is in meltdown they cannot think coherently.
So how do you expect them to make coherent choices? (same text is on gold below)
“If I’m looking at you, I’m not hearing you!”
“To have to keep telling my self that I must look at you, means that is all I am thinking: “must look at you”-
I am not hearing you, so I’m not able to learn.”
I don’t hide and often refer to the fact I’m likey autistic (working diagnosis). Yet still not asked for an autism perspective, or even the fact I have a diagnosed child and one waiting assessment. I grew up with an autistic brother.
Actual Âûtisitcs have great insights, there are reasons big companies such as Apple and Microsoft seek out autistics. They often have unique input and out of box thinking. There are huge disparities between Children Autism teams and Adult teams.
We’ve all heard:
You can’t be autistic, you’re too social.
You can’t be autistic, you have empathy.
You can’t be autistic, you’re too polite!”
You can’t be autistic, you make eye-contact! – this one I’ve seen an autism diagnosis refused purely because the child gave eye contact!
You don’t look autistic! Autism doesn’t have a look. That’s like saying “you don’t look deaf!”, “you don’t look…*state obvious here*
If your autistic, what’s your gift? (statistically only 10% of âûtists are savants)
You can’t be autistic, you can talk! Fact. Some autistics over share, talk more when anxious, ramble, talk on seemingly unrelated tangents, some talk a lot (often limited to their special interests and/or they bring a topic back to it). Some autists are selective mute- this isn’t a choice if they talk, they literally can’t due to anxiety. This could be around all people, certain people or certain times. My autistic daughter is selectively mute, yet if she deems you “ok”, and she’s comfortable she can talk for England. Yet some autistics talk to everyone about everything, with no filters. Some are people-pleasers saying what they think you want to hear, or copy with echolalia- which can be delayed from words heard days ago or just now.
Every autistic is unique. Every autistic has strengths and struggles. The well-known quote by Stephen Shore, “if you’ve met one person with autism, you’ve met one person with autism”. Just because an artist appears sociable on the surface, doesn’t show the underlying masking, think a swan. Graceful on the surface but legs paddling fast under the surface. Masking is exhausting.
We most recently have started to understand 4 different masking types. Most jump between all of them at some point, often depending on environmental factors. Flight, Fight, Freeze and Fawn are at their basis trauma responses, the brain goes into survival mode.
As my daughter states: “If we can’t think constantly, how do you expect us to make coherent decisions!”
Dan Segal explains it well with his “flip the lid” https://youtu.be/G0T_2NNoC68 and how the brain needs to work in unison.
Flight. Running away from a person, a situation or because they know they are triggering and wait to her a way to regulate.
Fight. This is pretty self-explanatory. Fight can be a physical or verbal response to being overloaded. Flight may change to fight if being blocked in or stopped from escaping.
Freeze. Or shut down. Withdraws. May not speak. They May not be able to verbalise. Again this may change into fight or flight if pressure is put to talk etc. “Use your words” is an example I’ve seen! I
Fawning. People-pleasing. Saying what we think you want to hear, in hoping you’ll then leave us alone. (autistic 17 years old). Fawning can also be confrontational/ challenging. This is by far the lesser-known response.
I offer FREE sessions (under my business name) to schools and professionals on masking. Some request information, some follow up. Most rarely don’t even bother. http://www.phoenixasends.co.uk *
There seems to be an undercarriage of voices who don’t “deem” parents can be professionals, especially if they have disabled children. I know many professionals with disabled children, and/or are disabled themselves.
What makes us any less professional?!
All the ones I know and work with are trained, insured, DBS checked etc.
*free session available virtually or face/face. Must be booked during April but can be held any time this year.
Ausome Girls 