Ego is a funny thing. It makes people proud and vain at one end of the scale or insecure and paranoid at the other. It isn’t therefore, necessarily a good thing to possess. But most people have one, unless they have learned to master it and let such burdens go. The male ego is something that is famously guarded, it’s something females are not supposed to dent. A man must not feel his “masculinity” is under question. Machismo, manliness, masculinity…no matter how well hidden it is, in a metro man, a nerd or a hippy, they all have male pride…an ego.
When a man becomes a father, he often seems to see the progeny as a reflection of himself. The participation of his seed in the process seems to take on a role larger than it played in reality. It’s almost a primal thing. He of course only contributed 50% of the genes and therefore characteristics, to that child, but the ego seems to be slightly blinded to that and if something goes awry, many men take it as a personal fault against their self. This is probably more so in the case of an invisible disability, which is not apparent in the baby, lulling the father into a false sense of security for a while, only to be told later their child is disabled, is autistic.
Many dads of autistic children brush away the worried mum’s initial voicing of concerns, sometimes this leads to disagreement about whether to have the child assessed for autism. Stories abound on community forums by such mothers, here is a sample:
- http://community.autism.org.uk/discussions/health-wellbeing/parents-carers/father-ex-husband-denial
- http://www.circleofmoms.com/autismaspergerspdd-awareness/i-need-help-my-husband-will-not-discuss-or-even-acknowledge-our-son-s-diagnosis-398383
Media articles and blog posts too:
- http://www.telegraph.co.uk/women/mother-tongue/9602643/Accepting-Autism-one-fathers-path-to-understanding-his-son.html
- http://www.popsugar.com/moms/When-Mom-Accepts-Child-Disability-More-Quickly-Than-Dad-27330829
Let me tell you what that type of ego-driven denial can do to a child and the family.
Mothers usually know their children intimately. OK dads usually know their children well, but unless they have become the stay-at-home primary caregiver, they don’t know the child like the mother does. Mother’s instinct is a very strong thing. Mothers spent nine months growing that baby in their body, feeling it move, nourishing it, being joined to it by a cord. They often are the ones to feed the baby, sometimes from their own body. They learn every habit, nuance, whim and personality trait of that child. They take the child to playgroups and other places where mothers (who notoriously compare their child to the children of peers) congregate, so they pick up a lot. Of course, if a child is severely autistic it will be blatantly obvious from early on.
So, when you have a dad dismissing mum’s concerns, telling her it’s all in her head, she often will believe it, especially if it’s a first child. She will question herself, tell herself she’s worrying too much. And if the dad is unsupportive and attributes the behaviours to the mother’s parenting-style, she will often believe that too. Especially if she has spoken to any professional about her concerns as the initial reaction is to fob parents off on parenting courses to avoid conducting assessments. He will cause self-doubt and insecurity in the mother. He’s worried about his child being stigmatised and the disability being a reflection on himself. So mum won’t take the child to the doctor for an autism referral, the child won’t be diagnosed and won’t get support.
You then have a situation, where mum is dealing with often very challenging behaviour and nobody believes her that something is up. This may cause tension and arguments between mum and dad too, mum may be struggling with the majority of the child’s difficulties alone a lot of the time. Even if mum takes the child to the doctor, if dad-in-denial is there, he will, with that ego of his driving his fear and denial, feel compelled to say that he hasn’t noticed anything wrong, hint that he thinks mum is worrying too much. And of course, with age-old stereotypes still abounding in society, mum will be viewed as a worry-wort, a bit neurotic and if it’s a first child, inexperienced and needlessly panicking.
So mum may resort to internet research to help confirm or deny her fears. The pet hate of the vast majority of doctors is internet research. No matter how bone fide the source, many will dismiss it, because mothers couldn’t possibly know more than the doctors. Only they usually do when it comes to autism: “Parental Recognition of Autism – Professionals Must Listen!”
Bearing in mind the incompetence of seemingly the majority of CAMHS, who are only too happy to fob families off with “not enough traits for a diagnosis” and the parent blame culture that is rife, with one parent unsupportive the child is almost destined not to be diagnosed, unless their autism is blatantly obvious. Because all too many doctors say “we don’t want to label the child do we”, what with them guarding resources tightly, we know the real reason they don’t want to.
What does lack of diagnosis do to a child? They exist in a world of social confusion, struggling with friendships and not knowing why. They likely have sensory issues and find the world a painful place, wondering why life is so difficult. They become overwhelmed and meltdown, often feeling ashamed afterwards – because that’s the thing, “high-functioning” autistics are usually painfully aware of their differences. They may stim and feel ashamed and compelled to hide it, because they’ve noticed other people don’t do it. They are likely to think themselves weird and wonder why they don’t fit in or feel like other people. They are likely have additional conditions (ADHD is co-morbid in around 43% of autistics and OCD is often in-built) placing additional pressures on them. They are likely to go on to develop mental health issues such as anxiety and depression from finding things so difficult. Mainstream school is very hard for most autistics and impossible for some. But without a diagnosis that’s where they will be. Figures of over 80% have been cited for autistics being bullied – other children seem to home in on someone who is different and target them. They will lack understanding of themselves, by secondary school things are likely to start falling apart if they haven’t before. By then, mental health conditions probably more ingrained due to struggling with an undiagnosed primary condition for so long.
The parents will be seeking out mental health support for their child once things start falling apart, by that point it may be inevitable that a diagnosis follows, but what a tragic and unfair way to reach that point. And if the child reaches adulthood without a diagnosis, by the time they do (hopefully) obtain one, they may well become very bitter towards their parents for not having them diagnosed sooner. I have read of some autistic adults estranging themselves from their parents as they were so angry at what felt like a betrayal, for them choosing not to get them assessed and diagnosed and leaving them to live through the above difficulties all that time, without understanding or support. Most autistic adults are relieved to finally have answers for their difficulties, they know their difficulties are not their fault and they are freed by the knowledge. So who is any parent to deny their child that right?
The other thing of course, is that if dad is denying the difficulties and brushing them off to other reasons, the child will feel misunderstood and even disbelieved. For instance, some dads believe a meltdown is the child being naughty and will treat it as such. If a child school-refuses, they may blame mum for not being firm enough. This will likely end up being the cause of a less than close relationship between father and child.
So any fathers out there, who are being told by the mother of their child that they believe they need assessing for autism, listen. What have you got to lose? If the child is not autistic they won’t be diagnosed. If they are, you will be enabling them to access the support they need. The diagnosis only needs to be disclosed on a need-to-know basis. If the child’s difficulties are that obvious people will have noticed already anyway. No matter what any official tells you, support usually is diagnosis-based not needs-based, no matter what it says in any policies and if your child has a high enough IQ to manage well enough academically, professionals won’t care about the other difficulties – so that means you must. And you want your child to have the right support. The earlier the intervention the better for their longer-term outcomes. You owe that to your child. After all, this is not about you, it’s not a choice, it’s a necessity.
There are times when I have a meltdown in my head. It’s hard to describe the feeling, I kind of internalise the meltdown and run it like a film in my head. Of what I truly need to do – but can’t. A film, running with me screaming my head off, ranting out all the words I want to yell at the situation or person. Imagining it like an alternate universe scenario.
Planet Autism Blog 