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Changing the Narrative? Keep Going.....

Updated: Jan 6

In the space of a day (21st July 2021), we have seen 2 reports published in England that have relevance for Autistic people and for social care. The first was the National Strategy for Autistic Children, Young People and Adults, 2021 - 2026 . The second was a report by Cerebra on the policies adopted by social work services to assess need regarding disabled children (Clements and Aiello, 2021)


Both highlight key issues that Autistic people and their families have known for some time. And, I would argue, social workers.


 

The National Strategy, whilst not focusing on social care (in fact surprising little specifically named or focused on social care in that report) identified the need for a national training strategy to increase awareness and acceptance of Autism amongst professionals working with Autistic children including into adulthood. I would agree. Training to date has been woefully and painfully unfit for purpose. The majority do not include collaboration with Autistic people and contain perpetual misconceptions and myths that do nothing but harm those these workers seek to support.





The Cerebra report identifies the failings of Local Authorities to assess disabled children’s needs without using a lens of safeguarding, leaving parent to feel judged and blamed.


And I don’t disagree. I have always questioned the rationale of a uniform approach of the single assessment to assess need where the sphere of need does not involve concerns around abuse and neglect. I understand the argument for a holistic family assessment within which individual needs of each child is explored. However, where disabled and Autistic children are concerned, if safeguarding concerns are not present, the procedure and format of assessments and reports does not enable the social worker to deviate too widely from this. This in turn means language and process cannot be adjusted. It is effectively an ableist approach wrapped up in the excuse of consistency, quality assurance and efficiency.


 

I've been there as a social worker. And as a parent. It’s not pleasant believe me. Even though I know the process, the sense of being judged exudes from every question, every suggestion. “Have you tried…..” will rarely be a revelation, or a creative personalised curiosity.


I also know the frustration of wanting to do a good and effective job with families who are exasperated by hurdles at every turn; growing in defensiveness through repeated disappointment, or misunderstanding because no-one explained what was or wasn’t possible other than saying “no”. You run the gauntlet of overbearing timescales and statutory performance measures through negative responses from both those you want to support and those in the higher stratus you wish would support you. You share one thing, parent and professional – you are dis-empowered.


Now, I am going to be somewhat cautious here. Because an assessment of need may actually identify abuse. We know disabled children are at increased risk of abuse and neglect (ONS, 2020). We also know that the voice of the child is not necessarily conveyed by the views of the parent; and we must always seek the voice of the child (regardless of how that is shared). So yes, we should always be mindful of the potential of any child to be experiencing significant harm. But that comes through a comprehensive, balanced assessment and initiated through indicators of concern, at any stage of that process. Not adopting a “one size fits all” position from the start, as identified by the Cerebra report.


 

So, what happens to the social worker who doesn’t check the child’s bedroom on an assessment visit? Or speaks with the child in the presence of their parent? Regardless of the referral concerns, this is deemed inadequate practice. The social worker is reprimanded. They are accused of failing to seek the child’s independent views, of not ensuring a thorough assessment of the child’s environment.


Yet these same social workers generally (if, for example in an assessment team) have no or little (or poor) training in Autism. They are time limited due to the statutory requirements of social work visits. These social workers are doomed to fail. They risk erosion of the parents’ trust as they imply through procedural actions that the home is not safe. They are risking professional chastisement for not following procedure or considering all possibilities. They are basing their analysis on limited knowledge of what “need” could be. And even if they did, there are no resources to support And they do this with a sense that they can’t do anything about it.


 

Bringing your best self


Well, actually you can. Lets start at the micro- or individual -level. Stand up for Autistic people by calling out lack of training. Seek out your own alternatives. There are plenty options online that are developed and delivered by Autistic people. Or, you could ask an Autistic person? Access research written by Autistic researchers (or neurotypical allies). Cast a critical eye over what you are reading/being told. Autisitca, Autism in Adulthood, SWAN and Aucademy are examples, (but not exclusively), of sources of wonderful, current and Autistic -led information, training and research. Autistic voices are getting louder, if you listen.


You can also challenge the assessment format in your own skillful way. Use the “Parent” section as a carers assessment if you don’t have a separate one. Frame it around what the child needs from their parent in a way that identifies each need and where the parent’s needs to support correlate. A strengths -based approach will still identify support gaps. It will still keep the child at the centre. Ask yourself- what would I want to be asked or explored if it was my child?


Explain the process to the parent. Collaborate how together you can meet the assessment sections. Be clear about the limitations of the report. Agree how to word terms, descriptions, views. Do all of this before writing the report. What would you want to know if you were being assessed? How would you like to be treated? Think reflexively, remain attuned in the room to the said and unsaid. How are you influencing the process and responses?


All of this is not exclusive to assessing need of disabled children. This is good practice. Working with Autistic or disabled children requires good practice – the same as all children. There is never any excuse for poor practice in assessment. Model your best individual and professional self and how this can be successful in your team.


 

Beyond the individual


But we need a systemic shift in relation to social care and Autism. And this is the key aspect identified by both reports. We all know the scenario. Social worker assesses need. Writes report. Takes to manager. Depending on the context, the team, the decision making process may end here, usually around threshold of support. But if there are resources or spending involved, the decision making climbs the management levels because, what most non-social workers don’t realise, is that social workers have very little decision-making clout. They are the assessors not the decision makers. People who hold the purse strings make the decisions in Local Authorities. And that is the problem.


Because these people are not necessarily social workers. They may not have any understanding or training is Autism. They will have limited engagement if any with Autistic children or their families (unless complaints are made and even then, the team managers are often tasked with buffering those at the top). And it is this level that hardly gets focused on in strategies, policy making or evaluations. There is some mention about services provision in the National Strategy. But it doesn’t call for senior managers or decision-makers to be trained and up-skilled in understanding Autism and Autistic need through the lifespan (our reduced lifespan compared to neurotypical people). This must happen or change will not even be considered.


Then we need to look at policy, both local and national as identified by Cerebra. This is probably the easiest and quickest change that could be made. If the motivation and will is there. But it’s easier to blame the worker on the ground. Or the family. Nationally, it’s the fault of the LA. They’ve got it wrong. Pointing the lens on your self can incur damage that is more than skin-deep, and illuminates error, imperfection, problems. It locates the problem in the system that you can’t escape. Single out the micro -level and the gaze will deflect from the macro. Zooming out as well as zooming in is key for change.

Ecological systems levels


Change needs action


But as social workers we also know that change can only occur successfully if there is intrinsic motivation to change. And that needs to come from the top as well as the bottom. You can advocate, challenge and evidence success within collaborative strengths-based practice. But you need the support and safe space provided by the leaders, the purse holders, the power source. And that is where the government needs to act. Now.


The National Strategy talks of training civil servants which is great. But I would like to see Autism understanding and inclusion modelled from the top of government down. The very top. Training is only the start. Putting it into action needs to swiftly follow. At the moment we have mainly welcome words. Now we need, no, we deserve, decisive, motivated action.



So, my question to you is - what are you going to do about it?

 

References

Clements, L and Aiello, AH (2021) Institutionalising parent carer blame The experiences of families with disabled children in their interactions with English local authority children’s services departments, Cerebra/LeAP/Leeds University https://cerebra.org.uk/download/institutionalising-parent-carer-blame/ accessed 21.07.2021

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