From the latest 39 Essex Chambers newsletter, a case that strikes my heart as well as professional interest, on the care of an autistic young adult (X) with severe autistic symptoms
It is broadly accepted by all parties that X suffers from an autistic spectrum disorder and that he has moderate to severe learning disabilities. Dr. Dalton is “confident that [he also has] an illness with affective and occasional psychotic components….probably best characterised as bipolar affective disorder” and this conclusion has not been challenged. The parties’ descriptions of X depict him similarly as largely non-verbal but fully mobile and able to read, write and use an i-pad to assist his communication. All parties agree that he is fully dependent on carers to meet all his personal care needs, food and fluid intake; and that he lacks capacity to litigate these proceedings, and to make decisions about where he lives, how he is cared for and the treatment he receives.
and his mother wishing to remain acting as his Health and Welfare deputy.
The legal case, is about whether the mother would be the proper person to be the deputy – a role ranking higher in health and welfare terms than a parent, although the parent’s introduction of evidence in the context of proceedings about care for an incapacitated adult is considered as highly important (“the evidence of the parents is of the utmost importance” in fact finding) MA Local Authority v. M, E and A 014] EWCOP 33.
In this case, sadly, the mother was convinced that the diagnosis of autism resulted from a reaction to vaccines and was influenced by the discredited Wakefield study. She was further convinced that the vaccinations had triggered inflammation of the gut and that a restricted diet with compensating supplements assisted her son, and this was evidenced by his behaviour.
The mother (perhaps because she had made an emotional investment as well as one of time, not to mention money) was unwilling, it seemed to the court, to accept the more standard treatments and suggested causes for both autism and its effects on the individual. Despite much work and many reports from leading experts in the field (as opposed to “experts” that the court found fell far below the standards required  ), she remained unconvinced that there might be an alternative explanation for the behavioural issues experienced by her son (that he was experiencing the difficulties of an autistic person, rather than caused by inflammation of the gut. “I am amply satisfied from AY’s presentation of her case within these proceedings that she is unable to accept that autism, rather than any bowel condition, is fundamentally the cause for much of X’s behaviour.”
As suggested by the Official Solicitor, representing X, “a person who does not listen to medical experts and work in collaboration with professionals in the best interests of the incapacitated adult is particularly ill-equipped to act as a personal welfare deputy”
The Local Authority saw the Deputy’s view as being restrictive and damaging to the wellbeing of her son. The revocation of the deputyship order was necessary so that respected clinicians could be allowed to treat the patient, following a more conventional approach to the patient’s situation. In addition, it was seen that the Deputy’s intervention in the treatment of her son had made his treatment far more difficult than it would otherwise have been, as it involved constant record keeping and other burdens on the carers time “The various e-mail chains included in the hearing bundles amply demonstrate that at times AY’s requests to care staff for information as to what and when X is eating, and how his bowels are functioning, have been excessive and unmanageable”
The comment on this case by 39 Essex chambers:
The Court had no doubt that AY was devoted to X and dedicated to promoting his wellbeing as she saw it. However, the Court was struck by the rigidity of her views and her refusal to accept professional medical advice. Rather, AY continued to pursue her views which worked against X’s best interests and therefore her appointment as welfare deputy was revoked. The revocation of AY’s welfare deputyship meant that she alone would not have authority to make these decisions for AY. However, the Court emphasised that AY was not excluded from the decision making process. The revocation of the deputyship merely restored AY to the usual position for the parent of an incapacitated (adult) child where her views would be taken into account in making any decision in X’s best interests. The Court championed the usual approach of collaborative decision making and in the circumstances agreed with the OS that there was no need to appoint anyone else as replacement welfare deputy. We would emphasise that there will be very many cases in which the appointment of a parent as the health and welfare deputy for a child with profound disabilities is entirely appropriate and correct so as to secure a privileged voice in decision-making. It often comes as a huge – and very unwelcome – shock to parents in such a position to discover that they cease to have any formal role at all in such circumstances when their child turns 18, and appointment as a health and welfare deputy can be very important. This case, though (as with A Local Authority v M) demonstrates the boundaries of the authority that a parent deputy can exercise.
The judgment in full here
Conclusions, paragraphs 112-116
Diet and treatment
When X’s diet was restricted and he was taking supplements, he remained autistic. At least since the beginning of this year, he has had access to previously restricted foodstuffs , and since July he has had an unrestricted diet, without any noted deterioration in his behaviour or the condition of his bowels. Restriction of diet is an infringement of X’s freedoms; and a requirement to take nutritional supplements is an imposition. In the absence of evidence of positive benefit from either the infringement or the imposition, I consider that neither is in his best interests.
Given the finding that AY will continue to seek testing and administration of 5HTP and nutritional supplements, I am satisfied that it would not be in the best interests of X for AY alone to have authority to make such decisions for X. I am satisfied that instead, it is in his best interests for decisions in respect of X’s diet and treatment to be taken in a collaborative process, after due consultation in accordance with the general approach of the Mental Capacity Act 2005.
AY’s views run counter to the generally accepted approach in respect of treatment for autism, yet she has pursued, and as I have found will continue to pursue, those views to the point of placing unworkable strain on those responsible for X’s day to day care. It follows that I am satisfied that she has behaved, and proposes to behave, in a way which is not in X’s best interests (however much she believes to the contrary.) It is clear that AY’s appointment as welfare deputy has worked against X’s interests, not to further them. I am satisfied that the appointment should be revoked.
I understand that AY will feel the revocation of her welfare deputyship as a blow. It is therefore appropriate to make clear that it should not – and I am confident that it will not – operate to exclude her from contributing to the process of welfare decision–making for her son. Rather, it restores her to the usual position for the parent of an incapacitated adult, as envisaged by those who framed the Mental Capacity Act. AY is clearly a person interested in X’s welfare (as well as being his deputy for property and affairs). Accordingly, wherever it is practicable and appropriate to consult her, any person or body making a ‘best interests’ decision for X must take into account her views, pursuant to section 4(7) of the Act.
There are good indications that “the usual approach” of collaborative decision-making can operate successfully for X. In particular, I note that the parties have been able to agree where X should live; and now that he is there, they have been able to maintain contact arrangements sufficiently well that no restrictions and no orders of the court are sought. With the issues of dietary restriction and supplement resolved by decision of the court, I agree with the Official Solicitor that there is, at present, no need to appoint anyone else as replacement welfare deputy.
 “In respect of X, Ms. Hayward’s statement falls a long way short of standards which would be expected of an expert witness. I have no confidence that the “recommendations” she makes are properly based on an informed consideration of his circumstances and medical history. I do not regard Ms. Hayward’s statement as reliable evidence in support of the assertion that X derives any beneficial effect from 5HTP or dietary supplements.”
On a final note, which is a very personal one, the view that the mother was the best person to make decisions for her son, because she knew him best is one that is frequently expressed, perhaps to empower parents, perhaps an overreaction to the “frigid mother” attitudes of the last century.
In this case, it appears that the court has burst that bubble – has clearly stated that the mother is not the best person to take care of her son and that she does not know her son best, and that her approach is not the best one for him,despite clearly being all consumed with the desire to care for him.
Perhaps the mother’s rigidity of view is based on an inability to support other views : this may indicate an autistic trait in herself. Perhaps, on the other hand, the support given to parents after diagnosis too often is about empowering the parent to take control, because there are inadequate resources for anyone else to do so. Who else would have been an unpaid carer for so many years, with such devotion, in the face of so many difficulties? If life has been hard for this parent, and she is defiant in her opposition to the ideas of others, it is hardly surprising.