The hidden effects of autism on families

As an adult diagnosed Asperger’s woman, with three children also on the spectrum, I know what it is like to truly live with autism and a large number of its effects.

I am an autism-focused counselor for under 18’s kids, who is far from conventional! Let’s face it, Asperger’s couldn’t be further away from conventional if it tried! Every day, the families I work with mostly have similar issues, and largely feel that “there is no hope for the future”, for themselves, or their children who are on the spectrum. The despair in their voices as they sob on the couch next to me reverberates through my heart, body, and mind every time. It is a reminder of the battles I once was faced with when my children were younger………

Families with members on the spectrum are continuously being scarily challenged every day, not only by their children but by some educators, health professionals, medical practitioners and just about every source of hope they come across. A lot of the families I work with have been continuously told that either,’ their child is just naughty’, or “they have poor parenting skills’, or child safety can become involved due to some children having developed maladaptive behaviors (usually caused by language/communicational deficits). This is by no means constructive help or support to either the family in its entirety or the member on the spectrum. Where are the proven interventions referrals? Where are the proven supports therapists, in-home supports, behavior support, therapy supports for the non ASD members of the household, social groups, support groups? These are what the families are looking for……. Practical support that works!… not blame, shame or judgment.

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The continuous judgment from the public when your child is having a meltdown in the supermarket in isle 4 because they are overwhelmed by the noises, lights and people leave you in despair. Some members of the public even have the hide to comment on “what the child needs is a good smack”, whilst sneering at yourself and your child, or rolling their eyes, this compiled on top of limited sleep, an exhausting regime just to even get to the shops in the first place with ASD kids can be absolutely debilitating to anyone directly involved. It breaks you down piece by piece, however, these caregivers get up every day regardless because of the unconditional love and commitment to their children, despite the ridicule and judgmental opinions of others.

Divorce, depression, anxiety disorders, extended family relationship disintegration, friendship extinctions, withdrawal from social activities, financial problems, loneliness, isolation, and despair are just some things’ autism families are highly and regularly affected by, as a direct result from lack of appropriate support, understanding, services, and hope. Caregivers devote so much time and energy into their ASD children, that, they often lose themselves in the process. They become run down mentally and physically, and become a high risk of developing any, or more than the above problems mentioned.

So next time you notice a child kicking, screaming, lying on the floor in isle 4 of your supermarket, please stop and think….how is this caregiver feeling?… offer to help by asking the question directly to the caregiver… what can I do to help? You may be surprised at the reaction you get, not to mention the overwhelming thankfulness from the caregiver for your offer and understanding attitude… it goes much further than you can imagine!

This article was contributed by Kristalee Oneile.

You can reach her at her site or on LinkedIn HERE

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  • I love this article Kristalee! A potent reminder to all that parenting is hard work with typically developing children where as the adult you are healthy and neurotypical yourself – let alone with the relentless anxieties, transition challenges, communication difficulties, social barriers and sensory differences that are part of living with ASDs.

    Many thanks to Adam for publishing this and to Kristalee for sharing so beautifully.

    • It is a great article and Kristalee has done a really amazing job writing and editing it. I’m really happy with how it came out as it’s a strong reminder as to just what some people are going through. ‘Not all disabilities are visible. Please think before you judge’. I think that’s a great quote and one that’s pertinent to this article.
      Love & smiles,

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