Chamber and committees

Petitioner submission of 27 September 2021

PE1837/Y - Provide clear direction and investment for autism support

At the last committee it was felt the Scottish Government (SG) had made “some headway”, highlighting the post diagnostic support (PDS) pilot. The concern about the PDS pilot has been highlighted in previous submissions and I would strongly encourage the members to read the actual petition and submissions made before assuming headway.

There was to be a new pilot of PDS, but the SG did not fulfil their obligation, instead they just made it look as if something new was created by paying existing charities £227,730 to evaluate their work over six months. The charities were always going to take this money and state their model was useful. There was a FOI sent to the SG about how this money was allocated, their reply, “in this instance the Scottish Government does not have minute(s) of the meeting(s) which picked the said organisations and any procurement/tendering of such applications for being in the pilot. This information does not exist”. How can £227,730 taxpayer money be allocated with no oversight?

PDS is only a fraction of what is needed. These pilots are mostly groups online, therefore not accessible for all autistic people. These charities only provide support to certain geographical areas and diagnosed within the last 2 years; what about other areas in Scotland and people who have been diagnosed longer than 2 years?

The term Post Diagnostic Support is misleading. Is post diagnostic 10 weeks, 10 months, 10 years after diagnosis? When does post diagnostic support stop and ongoing support start?

The petition asks for direction on what public service provides ongoing support for autistic people who do not have a learning disability (LD) or mental disorder. Why ask, if all of Scotland’s residents can request social service support through the Children’s Act (s.23 & 24) and the Social Work Scotland Act (s.12 for adults)?

A lot of autistic people & families can’t access social services. The main reason is because social services believe autism is a mental disorder and will therefore signpost autistic people to mental health services (CAMHS for example). However, mental health will often reject by explaining autism is not a mental disorder. This was evidenced in the recent CAMHS report on rejected referrals.

Why is there confusion around autism support?

There is the belief that autism is covered within the Mental Health (MH) Act. The Milan Report highlighted that autism be covered in the Act under the term LD, defined within the guidance of the Act. However, this definition was never enacted in the legislation or guidance. This is because 67% of autistic people do not have a LD.

However, Scotland had the impression that autism was covered in the MH Act under the definition of LD. This is why autistic people are either signposted by social services to LD or mental health, but both services will not support solely autism needs … this is how autistic people without a LD or mental health issue can’t access support. This was highlighted in the CPWG for Autism called ‘The Accountability Gap’ (supported by the National Autistic Society and Scottish Autism), explaining autistic people can’t access social services,

This is why there is resentment of the conflation of learning disability and autism.

The Scottish Government have set up the National Autism Implementation Team (NAIT) to promote autism. FOI requests were sent to the SG and NAIT asking if autism was a mental disorder. The SG responded saying it was and it was covered in the MH Act. NAIT responded saying autism is not a mental disorder and not in the act. How can the SG still say autism is covered in the MH Act when autism is not referenced anywhere in the legislation or guidance?

The SG will say autism is in the Act because they know there has been thousands of autistic people subject to the MH Act for no other reason than being autistic. Therefore, if the SG was to say autism is no longer defined within the Act, this then creates a potential legal difficulty; think how many autistic people have been subject to the Act when there was no legal basis? A national scandal?

The SG state autism is defined as a mental disorder within the MH Act, therefore social services continue signposting autistic people to either mental health or LD services’, often resulting in no support. This is why the petition is asking for direction and support.

The petition highlights a spend to save initiative, using the recommendations of the Microsegmentation Report; demonstrating local autism support teams throughout Scotland will save hundreds of millions each year.

Autistic people have suffered for too long, we need clear direction on who provides support, and as a commitment to finally getting it right, investment in local autism support teams throughout Scotland is needed.