New BBC Documentary on severe autism

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'My wife and daughter cannot be alone with our complex needs son'

“I’m supposed to be her protector but I’m also supposed to be his protector and when you’re caught in the middle, what do you do?"

For the dads of children with severe learning disabilities, life can often bring a lot of challenges.

BBC Spotlight has spoken to four dads of boys who all have a diagnosis of autism and a severe learning disability that can lead to upsetting and harmful behaviour to themselves and others.

They become bodyguards and protectors and in many cases face physical harm, and have called for more support and respite.

On Tuesday, a group of mums spoke out in a BBC Spotlight documentary about incredibly hard choices they have had to make when looking after sons with complex needs, often without any respite or support.

I Am Not Okay -

'They can't be on their own with him'

Séamus Flannigan is dad to 16-year-old Eoin.

“I could be out of the room and the next second I’m being called by my daughter or my wife because he’s kicked off again. You have to put yourself physically between him and them and get them out of the road," Mr Flannigan said.

“You think okay, at least I’m able to deal with this and it’s not my wife and it’s not my daughter that are getting hurt. But then you realise that they can't be on their own with him," he said.

“ They can't spend that quality time without someone being there as a bodyguard.”

One of the most touching scenes in the film is when the family are in a hydrotherapy pool with Eoin. The bond between father and son is clear.

“It’s so simple, just splashing about in the water, playing with the waves pushing against you, he just loves that and he loves you to be there with him.”

Those moments are what all four dads call the "small wins".

'He's getting bigger and stronger'
Frank Tipping’s 11-year-old son Theo can have great difficulty controlling his emotions, but there is another side to him.

“He is a gorgeous child. He is affectionate, he is warm. You can see he wants to belong everywhere," Mr Tipping said.

“You can see him struggling to figure things out, but it’s very difficult for him and it’s very difficult for us to understand what exactly it is that he needs.”

And it is those moments of struggle that can often escalate into distressed behaviour.

In the film, Mr Tipping often intervenes between Theo and his wife Julie, shielding her from the more harmful outcomes of Theo’s distress.

“Ultimately, you’re approaching a situation in which you could get hurt, you know, and that’s really hard to contemplate," Mr Tipping said.

“He’s getting bigger and stronger and I’m not sure we’re ready for that.”

Mr Tipping admits he feels very guilty discussing Theo’s difficult episodes.

“It’s not Theo’s fault. Theo is a great kid, he’s a godsend, he’s a blessing," he said.

“ But I feel every time we articulate the problem it feels like betraying him.”

'My hands are still black and blue'

John Bell’s 15-year-old son Rudy is strong and his outbursts have resulted in multiple injuries.

In the film Rudy bites and scratches his father's hands during an outburst as Mr Bell is trying to de-escalate things.

“My hands are still black and blue and that was five or six weeks ago. And it’s hard because you don’t want him to hurt you or other people. Or himself. When Rudy gets you he gets you good, you can really feel it," he said.

Mr Bell said he and his wife Carly felt taking part in the film was a last resort - they wanted to show the reality and how they are struggling.

“When people see this and professionals might see it, they might see what me and my family are going through," he said.

“We’re physically drained, mentally drained. I’m still trying to hold down a job but I’ve had to drop it down to two days.”

Social services have assessed all four boys should be getting regular overnight respite. That is where the children would go to a health trust facility and the families would get a break.

There are no spaces currently available in the Belfast and South Eastern Trust.

Mr Bell said respite was invaluable.

“It made a hell of a difference to everybody in the family. I mean everybody. Because you were getting a bed for the night, you were getting a sleep for the night."

Mr Bell has had medical issues this year including very high blood pressure: “It’s got to the stage where I’m running on empty.”

'There's not really anything I can do'
Danny Miller’s dad Steven has changed jobs to be able to spend more time at home.

“I used to be a mechanic and now I work for the Roads Service and lost almost half my wages," Mr Miller said.

“That’s something I’ve had to do to support my family.”

His wife Claire suffers quite significant injuries on a regular basis.

“I’m watching him attacking her and there’s not really anything I can do," he said.

“I’m supposed to be her protector but I’m also supposed to be his protector and you’re caught in the middle what do you do?

“A lot of the time we’re lying on the floor trying to protect him from banging his head on the floor."

Mr Miller says he is devoted to his son and believes regular respite would help the whole family.

The South Eastern Health Trust who look after Danny and Rudy’s care said it would not comment on their cases.

It said it understood the pressure on families but it could not offer respite because beds were being used by children who need long-term placement.

It added that it hoped future funding would be made available.

The Belfast Health Trust who are responsible for Eoin and Theo’s care said it was very sorry that it was unable to offer overnight breaks, but that the Trust was exploring ways of reintroducing them.

Health Minister Mike Nesbitt said the current situation was unsustainable, adding that he was determined to see "urgent improvements".

Functional labels and the ongoing conflation between Autistic identity, intellectual disability and various mental health issues are toxic and ultimately dont help anyone.

The problem with many of these programmes is that they seem to cater to an unpleasant appetite for 'disability porn' among the general population.

If people want to educate themselves they should be looking at things like the excellent YouTube videos produced by Dr Luke Beardon.

In my opinion.

My opinion:

My Autistic identity is just that an identity. It is the way my brain is hard wired. The same way that a significant minority of the general populations is. It is part of of the natural diversity of human beings the same way a number of other minority differences are for example different sexual orientations. Any attempt to prevent it is eugenic in nature and any attempt to change how it manifests is deeply traumatising. Both are unethical. A number of non Autistic people make a comfortable living from the 'business of Autism' and have a vested interest in pathologising our identity.

Dr Beardon was my personal tutor when I completed my Masters degree programme in Autism.

I think that we will have to agree to disagree on his level of academic standing.

As regards the medical / clinical research that you are referring to then again we will need to agree to disagree.

My opinion:

My Autistic identity is just that an identity. It is the way my brain is hard wired. The same way that a significant minority of the general populations is. It is part of of the natural diversity of human beings the same way a number of other minority differences are for example different sexual orientations. Any attempt to prevent it is eugenic in nature and any attempt to change how it manifests is deeply traumatising. Both are unethical. A number of non Autistic people make a comfortable living from the 'business of Autism' and have a vested interest in pathologising our identity.

I reject the concept of Autism as a disorder, dysfunction or something that is undesirable.

I embrace and celebrate Autism as an identity and naturally occurring neurotype.

Its a sad fact that the stress and pressure of living in a world that is not geared to Autistic identity or needs causes such trauma in some Autistic people that they are then impacted by mental health and physical issues.

A number of us believe that the continuing medicalisation of what is a perfectly normal variation in the human neurotype perpetuates this state of affairs.

It would appear that the conflation between Autistic identity and the mental health issues caused by environmental factors including the attitudes of others remains a real barrier to people understanding and accepting Autistic identity. A paradigm shift in thinking is badly needed here so that we can progress in a more humanistic, inclusive and empowering manner.

I totally disagree with your views but absolutely respect your right to hold them.

I considered those and other points in great depth over decades working as a qualified clinician.

This included leading Autism assessment processed and providing DSM/ICD diagnosis.

Every facet of the human condition is genetic. Autism is present due to generic/generalised and not specific genetic differences - similar to many other states of being.

Until the early 70's homosexuality was considered a disorder and included in the DSM. You could be diagnosed with it. The same arguments were used by the conservative medical establishment and others to keep it as a 'disorder' that are being used now to keep Autism as a 'disorder'.

We continue to let neurotypicals define and control us.

Thats me view and the view of many Autistic people I know.

One facet of our identity is that we often develop strong and immovable opinions on things - which may be linked to Monotropism. So the extent in to which we are polarised on this is quite understandable. However, over 40 or so years of working in clinical services some of it as a qualified diagnostician my views did change - I started out thinking very much as you do and am now in a very different place.

As I said, I think we just need to agree to disagree.

Kind regards
Ian

I reject the concept of Autism as a disorder, dysfunction or something that is undesirable.

I embrace and celebrate Autism as an identity and naturally occurring neurotype.

Its a sad fact that the stress and pressure of living in a world that is not geared to Autistic identity or needs causes such trauma in some Autistic people that they are then impacted by mental health and physical issues.

A number of us believe that the continuing medicalisation of what is a perfectly normal variation in the human neurotype perpetuates this state of affairs.

It would appear that the conflation between Autistic identity and the mental health issues caused by environmental factors including the attitudes of others remains a real barrier to people understanding and accepting Autistic identity. A paradigm shift in thinking is badly needed here so that we can progress in a more humanistic, inclusive and empowering manner.

I totally disagree with your views but absolutely respect your right to hold them.

Whether or not autism is an actual disability or simply at the very edge of “normal” is a difficult question to answer due to the ridiculous variability of not only the individuals with autism but also of the environments that they live in.

Consider, for instance that level 1 autism, as it’s currently defined, literally did not “exist” as a disability until well in to the industrial era (WW2 to be precise). There’s a good argument to be made that the problem isn’t necessarily the people, but rather the environment - which has now become literally unescapable.

If you put a person with level 1 autism in to the right environment, their “disability” no longer becomes a problem.

So I’m personally inclined to agree that level 1 autism is simply at the edge of “normal”, rather than being a disability. The disability is mostly environmental.

That being said, someone with level 2 or level 3 autism would absolutely have been considered seriously disabled, even before the Industrial Revolution. That is the group that the BBC documentary is talking about.

The conflation you refer to is a result of modern society choosing to put both of these groups in the same category, which IMO is problematic.