When a child is newly diagnosed, parents often feel guilty and then fearful. They fear their child being developmentally behind, getting bullied, not fitting in, being disabled, being stigmatized.
A parent’s distress about receiving an autism diagnosis is often because of the messages society, and in particular professionals, family, friends and organisations send out about autism. Messages of “bewareness” and lacking hope.
It is always a choice as to the road to take, the attitudes we hold, and the behaviours we show our children following their diagnosis.
It is important to recognise that we should have our children’s back. We must be their greatest supporters. They must know that we are there for them. Society can be cruel but we can be their calm in the storm, we can shelter them from the hostilities they may face. Develop a thick skin against those who attempt to criticise your child or your parenting style in the face of autism. Don’t take the child’s behaviours personally.
To do this it is important to realise that autism is not some add on. There is not some hidden child beneath the autism. Autism is neurological – it makes up the core of the child. We cannot say we hate autism but love our child. Because to hate their autism is to hate their neurological make-up – something they can never change. This is the same as saying I hate their skin colour but love the child. It makes no sense. We have to love unconditionally.
Parenting any child is challenging – parenting is not a job for wimps. There will be highs and lows, there will be wins and losses.
Children often come with a variety of needs and challenges without autism – that’s just parenting. Blaming a child’s autism for making things challenging is the same as blaming the child. They can’t separate their autism, it isn’t an add on. It is them.
Find other autistic adults to help. We are a resource. Many of us are willing and able to help. We understand your child. Our autism may not be the same but will have much in common. We can often contribute as much, if not more than experts, because of our shared neurology.
Allow us to develop in our own time and in our own way. I hear of parents trying to get rid of their autistic child’s special interests and I mourn for their child. Our special interests are important for us, they may provide a career path later on. Our milestones are not necessarily going to line up with those determined by child development experts. Encourage us, give us opportunities, but don’t force us to comply with someone else’s developmental timeline.
Think carefully about therapies. Some Autistics are anti any medication or therapy. Personally, I am in favour of gentle therapies that guide and nurture a child. Therapies should allow the child to blossom without trying to ‘fix’ them or make them ‘appear normal’. Therapies and medication should be about what the child finds helpful – this is about them, not us or you as a parent.
I am not personally in favour of therapies that extend to 40 hours a week. A child needs to just be, to play, to laugh, to stim, to enjoy life without being locked into a demanding schedule that is likely to trigger meltdowns and involve considerable financial and emotional stress for parents.
Many parents head down the road of medications out of desperation and I despair of some of the medications children are on. Most drugs prescribed for children have not been tested in children. For example, while adults can give informed consent to participate in a clinical trial, children can’t because “consent” implies full understanding of potential risks and other considerations. Anti-psychotic drugs are sometimes given to autistic children and I fear the long term health implications of this. For example, Resperidone (often given to help with aggression) can cause huge weight gains. I would personally favour proven natural remedy treatments over hard medications. I recognise sometimes there is little choice, especially with some co-occurring conditions such as epilepsy, but explore options.
Give your child dignity by always presuming competence. Your child may be young, your child may have co-occurring conditions but your child is likely to understand more than you or so called experts think. There are many ways to communicate and if your autistic child is non verbal it doesn’t mean they have nothing to say. They need to be helped in finding other ways to communicate: this could be RPM, Apps, sign language, writing, art, even playing. Remember communication is the key, not speech.
Find other autistics. Your child (and likely you!) need them. Your child needs to understand there are others like him/her. Your child needs to realise they may be different but that is okay – different doesn’t mean wrong. Find autistic adults. One of the best things I did was find autistic adults as my son was his early teenage years. He realised he would be alright. He had someone to ask questions of that wasn’t his parent. He could view their lives and see hope.
Finally practice and promote Autism Acceptance. How you treat Autism and your Autistic child sends a strong message to society.
If you portray that your child is broken and needs to be fixed then that is the message that society will take from you. Those of us who are Autistic Adults believe we don’t need fixing, that we are not broken. That we have value and worth as we are.
That we have much to contribute (and many of us have already contributed) in a positive manner to society as a whole. Learn to embrace the Autistic culture because your child is part of it. And you could find even you are a part of it…it is not uncommon for parents to follow through on their own diagnosis following the diagnosis of a child.