Barriers to Autism and SDS

We are about to start some work on Autism and overcoming barriers to accessing SDS. Does anyone have any experience they’d like to share; positive or negative?

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I was lucky enough to be on the SDS pilot in Aberdeenshire. My experience was good in that I was successful but that was probably down to having help from someone who knows the system. Potential barriers for me would be not be allowed to have a trusted someone attending meetings with me and usual lack of awareness of everyone with autism being different, having different challenges. Hope this helps …

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My son and I are autistic. I could write a bit about it but I don’t have time right now and may forget.

@Josh a reply here so you get a reminder! And remember if you’d rather share privately you can DM @Donald or we can pass on if you email info@sdsscotland.org.uk. Be great to hear your experiences either way.

I’ll reply here as I don’t mind it being public.

There were definitely barriers, but not all of them were made worse by my being autistic, and in some ways being autistic was an advantage. There were also two contexts. First, applying for support for me in order to support me to be a parent. Second, applying for support for my son to have social opportunities. I’ll take each context in turn.

Barriers to support for me.

  1. My disability being invisible. The social worker took one look at me, saw that I could walk and talk and immediately assumed that I was ineligible. She made a point of comparing me to people who couldn’t get out of bed or go to the toilet without help, and that the care cake was small and only the most deserving get support. Additionally, because I am so good at communicating outwards, i.e. from me to others (usually - there are exceptions related to my disability) everyone assumes that I also understand incoming communications perfectly, and I really don’t.

  2. She had no concept of support-for-me-for-me being subtly different from support-for-me-so-I-can-support-my-son. She only looked at my needs rather than looking at my needs in relation to my son. She did not mention the Carer’s Act 2016 under which unpaid carers may be eligible for SDS support.

  3. Moray Council fettering discretion regarding support under the 2016 Act by offering, as a matter of policy, a blanket £300 per year for anyone found eligible. It is unlawful not to have regard for individual circumstances when you are given the discretion to do so, instead applying a blanket policy regardless of individual circumstances. I don’t know of anyone (anywhere) in receipt of a direct payment (or any SDS support) by means of the 2016 Act. I’d be interested if SDSScotland do know of any examples. Moray Council have subcontracted the preparation of Adult Carer Support Plans to Quarriers, which confused me greatly to the extent that I was unable to cope with fighting it and sorting out all the confusions.

  4. Communication in meetings. Meetings happen face to face, and we are typically unable to take minutes (to challenge the authority’s minutes) and engage fully with the meeting. Decisions are made quickly at meetings without offering autistic people full processing time and access to relevant information in good time. I refused to make decisions at meetings and insisted wherever possible that all decisions and communications be done by email. Sometimes phone calls are used to ambush people and get them to agree to something without proper consideration and to avoid a paper trail. Mutual misunderstandings and poor record keeping make face-to-face meetings worthless.

Barriers to support for my son

  1. Assumptions based on diagnosis alone. Moray Council had some specialist autism provision that did not meet my son’s needs. But as soon as they heard the word ‘autism’ we were simply railroaded into that provision and I had to fight to get him out of it and was ready to make a discrimination claim and the threat of that was enough to get him out.

  2. No one told us about Co-ordinated Support Plans (under the Education (Addition Support For Learning) (Scotland) Act 2004). This was the mechanism by which we accessed SDS Option 1. I took him out of school and the autism unit to protect him. I requested a CSP primarily to get his educational needs met, but also to get his social needs met now that he was out of school and had no social opportunities. A small SDS support package was written into the plan. All of this was my idea and my son and I both argued for it. There is no way on earth any of the professionals would have come to this solution on their own.

  3. Ignorance of the SDS process, in particular the creation of personal outcomes. These are supposed to be agreed in a support plan, not determined by the LA alone.

  4. Ignorance of the SDS process, in particular that it actually entails giving up control of public money to a private citizen (and a disabled one at that!) which they can then spend as they wish according to certain conditions. I suspect this is a massive cultural barrier that many managers and decision-makers simply can’t cope with. Of course, there is control, but control is exercised in the negotiation of the agreed outcomes, in setting the quantity of support, and the monitoring process.

  5. Failure to distinguish means and ends within the agreed outcomes, thus reducing flexibility of use.

Being autistic has helped in some ways:

(Edited to remove generalisations)

  1. I have second hand experience of direct payments in relation to my autistic friends, so I understand the concept and how it’s generally supposed to work.

  2. By virtue of my autism, I don’t mind making a fuss in the sense of ‘not fitting in’, so am willing to fight where some others may not be.

  3. My life experience and autistic social temperament means I don’t tend to automatically believe what authority figures say.

  4. By virtue of my autism I an mot inclined to believe that just because everyone does something a particular way (e.g. prepayment cards, managed accounts) it doesn’t mean that’s necessarily correct.

@jeremy @Donald

@Donald I don’t know if this is exactly what you’re looking for, but there is a significant issue for children and young people with autism (and their families) accessing SDS due to local authorities applying criteria that effectively excludes many of them.

The LA where I live and work will only offer an assessment to families where there is a child/young person with ‘a diagnosis of Autism with an associated learning disability and where the condition severely affects day to day functioning’. This means that many families are really struggling to access support for things like respite, regardless of the overall pressures and needs within the household. For example, there could be a single parent with more than one child with autism in the household, but if none of the children have a learning disability they will not meet the eligibility criteria.

I recently contacted Cerebra about the lawfulness of this and they signposted me to this study that they were involved in, where they refer to these as ‘autism-plus’ policies: Autism Plus Report - Cerebra

Thanks for the link to the report. They are talking about England, but from what you say it looks like there are examples in Scotland as well. This will be just as unlawful in Scotland as England as as far as I can tell after a quick look. Straightforwardly discriminatory.