Autisme

Autisme: Faire le deuil de l’enfant qu’on pensait avoir

Élever un enfant autiste non verbal est émotionnellement épuisant. C’est dur pour toutes les personnes impliquées. C’est difficile pour Charlie qui ne peut pas communiquer au-delà des besoins de base (comme « Je veux de l’eau ») mais c’est aussi dur pour nous, ses parents.

Aujourd’hui, je vais discuter d’un sujet tabou. Enfin bon, il semble que tout soit tabou dans le monde de l’autisme. Dois-je dire « Charlie est autiste » ou « Charlie souffre d’autisme »? La thérapie ABA est-elle une torture? Les étiquettes fonctionnelles sont-elles nocives? Les vaccins causent-ils l’autisme? Le symbole de la pièce du puzzle est-il offensant? Vous trouverez toujours quelqu’un qui essaie de vous culpabiliser pour avoir fait, ce qu’ils voient comme des mauvaises décisions pour votre enfant.

Élever un enfant non verbal est assez difficile … mais certaines personnes ressentent le besoin de remuer le couteau dans la plaie. Quoi qu’il en soit, réaliser que j’allais élever un enfant atteint d’autisme grave non verbal m’a fait rentrer dans un processus de deuil.

enfant autiste

Autisme et chagrin

Oui, le deuil. Quand Charlie a été diagnostiqué, tant de rêves sont sortis par la fenêtre. Toutes mes attentes et tout ce que j’avais imaginé faire avec mon enfant ont disparu d’un coup. Bien sûr, je suis reconnaissante qu’il soit en bonne santé physique mais cela ne me réconforte guère. Autisme sévère … Vous ne pensez que cela n’arrivera jamais à votre famille, mais c’est possible. Cela nous est arrivé. Charlie est merveilleux mais nous serions plus heureux si nous pouvions entendre sa petite voix nous parler de sa journée ou simplement réclamer un jouet. Parfois, je suis brièvement submergée par la constante conversation de Jude, mais très vite je me souviens à quel point ses paroles incessantes sont incroyables. 

Je ne sais pas pourquoi c’est si difficile à accepter pour certaines personnes. Les parents d’enfants autistes doivent faire leur deuil. C’est d’ailleurs une partie saine du processus après avoir reçu un diagnostic officiel de TSA.

Je pense qu’il y a un tabou qui entoure le sujet deuil et de l’autisme du a la monté en puissance des mouvements d’acceptation de l’autisme. Vous pouvez lire partout les gens comment l’autisme rend les gens ce qu’ils sont, comment l’autisme est incroyable et devrait être adopté comme un trait de personnalité plutôt qu’un handicap. Il y a même une journée de la fierté de l’autisme. Bon sang, j’aimerais que mon enfant soit autiste si léger qu’il puisse être fier d’être autiste. J’aime mon garçon, ses bizarreries et sa personnalité, mais s’il y avait un moyen pour moi de lui donner la capacité de parler, de montrer de l’amour, et d’apprendre des compétences de soins personnels, je le ferais en un battement de coeur.

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14 Comments

  • Reply
    Rachel
    2017-12-12 at 5:26

    Eileen—I love this article! I think (like you so eloquently wrote) that autism parents are made to feel guilty for expressing and feeling the severity of emotions that go along with a diagnosis and the loss and grief. I’m so happy you shared this with the world because I thibk it gives other parents permission to have the same feelings.

  • Reply
    Maria
    2017-12-12 at 8:10

    Great post Eileen, is so true, tolerance should start with allowing the parents to feel whatever they feel about this situation… the world is so full of hate, the change should begin with tolerance being that, tolerance, not to be another way of judging people, because they have to react in a particular way to something as hard as autism. I’m with you in your grieve, always, with love and support

    • Reply
      Eileen
      2017-12-20 at 5:30

      Thank you so much for commenting Maria. I really appreciate your support!

  • Reply
    Siraya
    2017-12-12 at 3:30

    My son is 3. He was diagnosed a year ago this week. Right now he isn’t very verbal we don’t know if he will be. He was verbal and has regressed drastically.

    This post spoke to me in the strongest way. I feel so guilty for grieving. Yes, it’s been a year. No I don’t see me any closer to having a conversation, his 18 month old sister is “passing” him academically, I cry at weddings because I may not have a mother son dance. I explain these feelings to a NT family and I get radio silence. I try to blog as honestly as you so I too can help those feel less alone but also have the outlet. Thank you for posting your honesty-I feel much less alone.

    • Reply
      Eileen
      2017-12-20 at 5:29

      I feel guilty about it too but at the same time I’m convinced it’s a healthy and natural part of the diagnosis.
      Charlie used to talk too. I think, his regression was one of the hardest part. Not hearing his little voice anymore…

  • Reply
    Victoria
    2017-12-14 at 11:01

    Thank you for voicing what I believe must be the thoughts of many autism parents. It’s certainly made me feel less alone in my own grief. I’m mid diagnosis for my entirely non-verbal 2.5 year old. The grief that I’m still feeling is only matched by the guilt I felt when the paediatrician told me to prepare myself for the strong likelihood of autism and I burst into tears. I felt guilty and alone for not being able to see the positives in what I found to be a worst case scenario. I wish you and your family happiness and courage along your bumpy journey. Thank you for your candour

    • Reply
      Eileen
      2017-12-20 at 5:28

      I think most of us feel this way. It’s just hard to admit. You’re not alone! Thank you for taking the time to comment.

  • Reply
    Isis Wise
    2017-12-16 at 8:45

    I love this! Grieving is such a natural part of this diagnosis but we parents are rarely allowed to express our grief. I grieved horribly hard when my now 17 year old daughter was diagnosed at 3 years old. I didn’t allow myself to grieve at all for my now 13 year old son when he was also diagnosed at 3. I think Autism is different than many other childhood diseases or disorders because there is a certain unknown and desire to try every possible therapy under the sky to see how far you can get towards remediating the Autism. This almost constant and active pursuit of hope keeps you from really just accepting the diagnosis. Acceptance is a very necessary step in the grief process and it’s only after many years and spending a fortune in money, time, energy and a ugly divorce that I was finally able to accept their diagnosis. Just think if your child is hit by a car and paralyzed you grieve that they will never walk again and then you learn how to lift a wheelchair and get on with life. You learn to be thankful they are still alive and able to talk and think and engage in life even though it’s from a wheelchair. Autism is different though because you keep trying different things to see if you can get them to « walk ». It’s exhausting! My Autism kiddos are now 17 and 13 and I’m just now finally accepting and now planning out life for them as soon to be adults with Autism.

    • Reply
      Eileen
      2017-12-20 at 5:27

      This was so well written. Thank you so much for your comment!

  • Reply
    Rose Gossett
    2017-12-29 at 8:56

    My daughter has been reading your blog. Thank you for show her and us the way. Emily is newly diagnosed and we are just beginning our journey. Thank you thank you. I adore your boys and cheer them on at every turn.

    xo

    • Reply
      Eileen
      2017-12-29 at 9:21

      Thank you for sharing my blog with her. Thinking about you. Don’t hesitate to message me with any questions.

      • Reply
        Rose Gossett
        2017-12-30 at 7:55

        Thank you ! I sure will !

  • Reply
    Michelle
    2019-02-12 at 10:05

    My son was diagnosed as autistic when he was four. He had many challenges and at around twenty years old he began to get a lot better. Although when he was between 13 yrs – 20 years old many people close to me, like my mom and my sisters and brother-in-laws, even his sisters; as well as almost all friends told me to institutionalize him. I never. My son died at 21 years old. Trust me when I tell you I would give anything to be with him again with all his challenges and outbursts..it is worth it. My heart is in constant pain, grieving living with an autistic son is nothing compared to grieving the loss of life of the gift of my son.

    • Reply
      Eileen
      2019-02-12 at 6:56

      I’m so sorry for your loss.

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